Christopher Cross Nearly Dies from COVID-19, Temporarily Paralyzed by Autoimmune Disease

Famed singer-songwriter Christopher Cross recently detailed his excruciating battle with COVID-19 in an exclusive interview with CBS.

In the interview, the 69-year-old Grammy winner described his ordeal as ‘the worst 10 days of [his] life,’ saying that he had a number of ‘come to Jesus moments’ where he was left begging for his life from a higher power.

Cross states that in early March, when the pandemic had just struck North America, he and his girlfriend Joy were touring in Mexico City for a concert. Upon their return to the United States, they fell ill and ended up testing positive for COVID-19.

“Nobody knew about masks, or anything like that,” Cross said. “No one wore masks on the plane, no one was doing that. We weren’t made aware that it was a problem.” In total, he and his girlfriend were sick for about three weeks’ time. While Joy continued to get better, Cross got continuously sicker, landing him in the intensive care unit at the hospital for 10 days.

In April, Cross says he finally began to feel better, and ended up going to the supermarket. However, when he returned home, his legs completely gave out. That’s when he was diagnosed with Guillain-Barre Syndrome (GBS), a neurological autoimmune disease which causes the body to attack its own nerves. His doctors believe that he developed Guillain-Barre Syndrome as a direct result of COVID-19.

Describing his COVID-19 and Guillain-Barre diagnosis, Cross says tearfully, “I couldn’t walk, I could barely move. And so, it was certainly the darkest of times for me…It really was touch-and-go, and tough.” He became paralyzed from the waist down, and his hands were paralytic as well; being a professional musician, he was concerned he would never be able to play the guitar again.

Guillain-Barre is one of many devastating effects that have been reported by COVID-19 survivors. Early in the pandemic, disturbing reports came out about multisystem inflammatory syndrome, an autoimmune complication in children who had been affected by the virus. It is thought to be similar to Kawasaki disease, an inflammatory condition affecting the heart’s coronary arteries.

Though Cross himself was only temporarily paralyzed by Guillain-Barre, he reports that he is still feeling the impact of this neurological autoimmune disease now. Initially, he used a wheelchair, and though he no longer needs it, he now relies on a cane as his mobility aid. He also suffers from nerve pain, brain fog, memory loss and issues with his speech.

Christopher Cross undergoes physical therapy to heal from the affects of Guillain-Barre and COVID-19.

Last month, Cross shared further details on his Instagram page about his grueling recovery, and paid tribute to the medical staff that helped him during that harrowing time, saying, “I’m grateful for my care team, especially my physical therapist, who has helped me to build strength and walk again.” He continued, “I realize that I am lucky to have survived COVID-19 and be on the mend from GBS. Most of all, I am blessed to have the love and support of many people.”

Though he’s recovered from the coronavirus, and has a 90% to 100% prognosis of making a full recovery from Guillain-Barre, Cross explained that he still wants to share his story to help others. “I felt it was sort of my obligation to share with people: ‘Look, this is a big deal…you’ve got to wear your mask. You’ve got to take care of each other. Because this could happen to you.'”

As part of his healing, Cross is turning to his music, which has always been a source of solace for the singer-songwriter. And, he can’t wait to get back to touring…when it’s safe to do so, of course!

Queen Latifah Raises Awareness about Scleroderma

Queen Latifah with her mother, Rita Owens, who passed away in 2018 after a five-year battle with Scleroderma. Photo credit: Johnny Nunez.

Queen Latifah, an actress, producer and singer, has become an advocate for those living with scleroderma after losing her mother, Rita Owens, to the disease in 2018.

Scleroderma, or systemic sclerosis, is an autoimmune disease that translates from Greek to ‘hard skin’, since hardening of the skin is one of the most visible manifestations of the disease, according to the Scleroderma Foundation. Symptoms of scleroderma can vary widely from person to person, and its effects can range from mild to life threatening. One of the most life threatening effects of scleroderma is that it can cause tissues on major organs to harden. In approximately 25% of patients, scleroderma results in interstitial lung disease, which causes scarring of the lungs and makes it difficult to breathe, which may also be fatal for the patient.

Unfortunately, this is what happened to Rita Owens. A lifelong educator, she passed out when teaching in her classroom. Though she had experienced shortness of breath and dry cough for a while, her family had thought it was just a result of her getting older. It wasn’t until she fainted in front of her students that various tests were done and specialists consulted, when she was finally diagnosed with systemic sclerosis-associated interstitial lung disease (SSc-ILD).

Before her passing, Rita Owens was one of approximately 300,000 Americans who suffer from Scleroderma.

In an interview with Good Housekeeping, Latifah said that the diagnosis came as a total shock to her family, saying, “That was terrifying because now we had to figure out, ‘what does it mean to have this autoimmune disease?’ I had never heard of scleroderma before.”

According to the Scleroderma Foundation, scleroderma affects an estimated 300,000 Americans. It’s onset is most frequent between the ages of 25 and 55, and women are four times more likely to have the disease than men. Localized scleroderma is more common in children, whereas adults are more likely to suffer from the systemic version of the disease that is more widespread in the body. Though the exact cause of the disease is unknown, it’s believed that genetic factors can make one more susceptible to the disease, and that it involves an overproduction of collagen.

Since little is known about the disease, Latifah is partnering with Boehringer Ingelheim Pharmaceuticals to raise awareness as part of the More Than Scleroderma campaign. “The right information and resources are out there and you can start by visiting SclerodermaILD.com. My hope is that I can help make others’ journey with SSc-ILD a little less challenging.”

Though Latifah was devastated to lose her mother after a five-year battle with the disease, she hopes to make a difference in her memory. “I found that knowledge is power when it came to managing my mom’s health, and I want to share what I’ve learned to help others. Anything my mon could do to help someone else have an easier journey, she wanted to be a part of – so it’s important for me to carry on my mom’s mission,” she explained.

To learn more about Scleroderma, visit the Scleroderma Foundation website.

Pro Tennis Player Caroline Wozniacki Describes Battle with Rheumatoid Arthritis

Caroline Wozniacki, a professional Danish tennis player, found herself embroiled in a match against her own immune system

From Grand Slam Champion to Bedridden

Caroline Wozniacki, a professional tennis player and Grand Slam champion from Denmark, was at the top of her game in 2018. At 27 years old, she had just finished playing in the Wimbledon, when she found herself feeling extremely ill.

“After Wimbledon, I just feel like I had the flu and wasn’t feeling well. I took some time off from tennis and training in the gym and was just going to relax, but I wasn’t feeling better. So I decided to go back to training and to see what happens,” the now 30-year-old tells Health in an exclusive interview.

She continued to play in tournaments across North America, but only continued to feel worse, and ended up having to withdraw from the Washington Open in Washington, DC as a result. “Day to day, I felt exhausted and was dizzy on the court,” Wozniacki explained. “I also had pain in some joints.”

Unbeknownst to fans, Carolina Wozniacki was battling an undiagnosed autoimmune disease through the later part of her tennis career

At the next tournament—the Rogers Cup in Montreal—Wozniacki was devastated to lose her first-round match. She put the loss behind her, though, and decided to focus her energy on preparing for her next match in Cincinnati. The following morning, however, Wozniacki couldn’t even move her arms or hands.

“I was in so much pain and felt exhausted. I went to see a doctor, because I felt extreme pain in my shoulders, elbows and hands,” she recalls. Her joints were swollen, but since her doctor didn’t see any damage to her ligaments, she chalked her pain up to her demanding travel schedule and athletic regimen. Strangely enough, her vocal cords were also inflamed and her voice became raspy.

Her symptoms continued to worsen, and because doctors couldn’t determine the cause, “They said, ‘Maybe you’re in bad shape. Maybe it’s mental. Maybe you’re pregnant.’ They basically called me crazy,” Wozniacki said. She found it extremely frustrating, especially considering she was in tip-top shape and had just won the Australian Open and a Grand Slam title the year prior. “I was 27 years old and the number two tennis player in the world. I’m in great shape and eat well. I do all the right things,” she lamented.

She insisted on getting multiple blood tests and consulting with various specialists. Finally, it was when she visited the fifth doctor in New York City, that it was discovered through a blood test that she had an autoimmune disease. However, it wasn’t clear which autoimmune condition she had. After a series of additional tests, she was finally diagnosed with rheumatoid arthritis (RA), a chronic inflammatory autoimmune disease affecting one’s joints.

Life After an Autoimmune Diagnosis

After being diagnosed with RA, Wozniacki is determined to live a full life

Wozniacki says that to her knowledge, she has no family history of RA or any other autoimmune disease. From what she understands, the condition could have been triggered due to her exhaustion and her immune system being compromised. Now, she keeps her RA symptoms under control through conventional pharmaceutical treatments, combined with lifestyle tips like consuming a healthy, anti-inflammatory diet and maintaining a consistent exercise routine. She also believes in getting enough quality sleep and avoiding stress in order to prevent arthritis flares.

Though the diagnosis was shocking, Wozniacki was determined to continue playing tennis, and even went on to play in the US Open and the China Open, where she won one of her biggest tournaments. She has since retired from playing tennis professionally, and now works to encourage other women living with chronic inflammatory diseases to share their stories through the Advantage Hers campaign.

Wozniacki describes her struggle with rheumatoid arthritis (RA) as part of the Advantage Hers campaign.

“It takes a long time for a lot of women to get diagnosed, and a lot of doctors don’t take their symptoms seriously at first because autoimmune diseases aren’t on a lot of doctors’ radars. I want women to know that if they have pain in the joints and feel exhausted, they should talk to their doctors about getting tested for RA or other autoimmune diseases,” she says.

Finally, Wozniacki credits her family for helping her to get through the difficulties of living with a chronic invisible illness. That being said, she also believes it’s important to connect with others living with the disease; “I really think it’s important to be able to speak to other people going through the same thing you are. It really makes a difference,” she said.

To learn more about Carolina Wozniacki’s journey with RA, check out the Advantage Hers campaign and share your own story on social media with the hashtag #AdvantageHers.

Professional Soccer Player Describes Life with Autoimmune Diseases

Shannon Boxx, a professional women’s soccer player, secretly battled two autoimmune diseases while winning medals across the globe

Playing Professionally with Invisible Illnesses

In 2012, Shannon Boxx, a professional soccer player on the US national women’s team, was at the top of her career. She had earned medals at three World Cup games and two Olympic gold medals. However, unbeknownst to her teammates and coaches, she had actually been diagnosed with a debilitating autoimmune disease a decade prior, and another autoimmune disease just four years ago.

Boxx, now 42, was first diagnosed with Sjogren’s Syndrome in 2002, which causes widespread dryness, joint pain and fatigue, among other symptoms. She was later diagnosed in 2008 with systemic lupus erythematosus (SLE), or simply, lupus, which also causes a myriad of symptoms, including joint pain, muscle pain, fatigue, skin rashes, brain fog and major organ involvement.

Treatment for Lupus and Sjogren’s Symptoms

When interviewed by the publication The Undefeated, Boxx said that she manages her lupus flares by wearing compression pants, which help with the joint pain that she experiences in her knees. She also takes hydroxychloroquine, also known as Plaquenil, an anti-malarial drug that helps her to manage the joint pain associated with both of her autoimmune conditions. Boxx describes her joint pain as severe; “There were times, even when I was playing on the national team, I was having teammates cut my steak for me because it hurt so much on my wrist to actually hold onto a fork or a knife.”

Fatigue and brain fog are other symptoms that Boxx battles daily. “I used to be able to run forever, and now I can barely walk sometimes for a mile or two. And that’s pretty heartbreaking,” she confessed. Boxx has children, and she wants to be able to run around with her kids for as long as possible. “To know that there’s days that I can’t do it, it puts you in a really bad place, mentally,” she said. When asked about how the fatigue feels, she commented, “It is this feeling of a weight just sitting on you and just even to lift your head off the pillow takes so much effort and your eyes don’t want to open. When I was playing it felt like my feet were in quicksand.”

Autoimmune Disease Triggers

Boxx explained that one of the main triggers for her autoimmune flares is stress. Now that the coronavirus is grappling the world, the global pandemic has added another layer of anxiety to the mix, especially given that she is immunocompromised. As a result, the professional athlete is following local shelter-in-place orders, wearing masks diligently and ensuring to frequently wash her hands and stay six feet apart from others.

Another source of anxiety is the fact that hydroxychloroquine, the medication that she takes, has become more scarce as a result of it being explored for its potential use in treating COVID-19. “It makes me sad that there are a lot of people that are suffering or even worse because they now can’t get the medication that they need,” she said.

Boxx believes another potential source of her flares is over-exposure to the sun, though thankfully, most days are overcast in her home of Portland, Oregon in the Pacific Northwest. She also frequently experiences the so-called ‘butterfly rash‘ that is a hallmark of lupus, and can arise following exposure to sunlight.

Two other factors that must be considered in the pathogenesis of autoimmune disease are sex and race. According to the Sjogren’s Foundation, nine out of 10 Sjogren’s patients are women; similarly, the US National Library of Medicine states that nine out of 10 lupus patients are women. Lupus is also three times more likely to occur in African American women than white women. Boxx, for her part, is a biracial woman, so her gender and ethnic background may have played a part in developing autoimmune diseases.

Moving Forward with Chronic Illness

Shannon Boxx plays in a friendly soccer match against Brazil’s women’s team.

Though living with two different autoimmune conditions is undeniably challenging, Shannon Boxx is determined to live her best life. She retired from playing professional soccer in 2015, and is focusing on taking care of her own health, and spending time with her husband and kids. Though she has retired from professional soccer, she enjoys playing non-competitive games with other international teams and coaching kids’ soccer teams.

Boxx is also an advocate for those living with chronic illnesses, and actively participates in awareness campaigns for the Lupus Foundation of America. Commenting on her conditions, she said, “I’ve been able to deal with it, and still do something that I love…[lupus] has shown me that I can’t take [soccer] for granted, because that’s something that I love to do. If anything it’s given me perspective.”

10-Year-Old Battling Autoimmune Disease Becomes Special Deputy

Caleb Anderson, Special Deputy for Boone County, is battling an autoimmune disease

Caleb Anderson, a 10-year-old boy from the Indianapolis, Indiana area, has become the newest member of the Boone County Sheriff’s Office.

Caleb, who is battling an autoimmune disease, wants to be a K-9 handler when he grows up. As such, the Boone County Sheriff’s Office wanted to surprise Caleb by swearing him in and deputizing him as a Special Deputy. At the swearing in ceremony, Caleb got to meet K-9 Deputies Clint Stewart and Taylor Nielsen, along with their trusted K-9 partners, Makya and Arco. Nelson Uniforms also donated a full uniform and tactical boots for Caleb to wear.

Caleb Anderson meets K-9 handlers and their K-9 partners at the Boone County Sheriff’s Office

Sheriff Nielsen commented, “Caleb’s theme is ‘Fight Courageously’, we can all learn from this.” He continued, “We have learned from Caleb that when we are faced with difficulties in life that we fight with everything we have. Keep fighting Deputy Caleb, we will always be in your corner.”

Sue Anderson, Caleb’s mother, said that Caleb currently attends Connections Academy, an online school. She explained, “Since Caleb is immune suppressed he can’t go into a classroom setting due to the risk of infection for him.”

Anderson explained that she was connected with the Sheriff’s Department when Caleb had the opportunity to meet up with Deputy Nielsen to do K9 training, and from there, was introduced to all of the amazing people at the Boone County Sheriff’s Office. “Caleb dreams about being a K9 handler one day and is a little shadow to the Sheriff and Deputy Nielsen,” she said.

The Autoimmune Warrior team is so happy to see that Caleb is realizing his dreams of becoming a K9 handler! Battling an autoimmune disease is never easy, and especially challenging as a child. Thank you, Caleb, for being an inspiration to us all.

To watch Caleb’s swearing in ceremony, check out the video on Boone County Sheriff’s Office Facebook page.

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Autoimmune Patient Becomes First Double-Lung Transplant Recipient after Surviving COVID-19

Mayra Ramirez is the first known patient in the US to receive a double lung transplant after surviving COVID-19

Mayra Ramirez, a 28-year-old paralegal, had always been relatively healthy, enjoying going for runs around her Chicago neighborhood. She had neuromyelitis optica (NMO), an autoimmune disease that affects the spinal cord and nerves of the eyes. Other than this diagnosis, however, she was in good health and took extra precautions when COVID-19 hit Illinois.

Mayra Ramirez, a 28-year-old paralegal and autoimmune patient, contracted COVID-19 despite taking precautions

In March, she began working from home and rarely left home. But in April, Ramirez says she began to experience symptoms of fatigue, chronic spasms, diarrhea, and loss of taste and smell, in addition to a slight fever. So she contacted her doctor, who recommended that she monitor her symptoms from home, and keep in touch with a COVID-19 hotline.

Unfortunately, in late April, Ramirez started to feel “really bad” and ended up going to the ER at Northwestern Memorial Hospital where she was put on a ventilator. From that moment on, she says “everything was a blur”.

Ramirez spent the next six weeks in the COVID ICU, on both a ventilator and ECMO, a technique of providing prolonged cardiac and respiratory support to patients whose heart and lungs cannot support themselves. By early June, her lungs showed irreversible damage and the hospital’s medical team said that it was clear that only a double-lung transplant could save her.

Mayra Ramirez’s lungs suffered irreversible damage from COVID-19 (pictured here is one of her lungs)

“Once Mayra’s body cleared the virus, it became obvious that the lung damage wasn’t going to heal, and we needed to list her for a lung transplant,” said Beth Malsin, MD, a Pulmonary and Critical Care Specialist with the hospital.

So on June 5th, Ramirez underwent the life-saving double lunch transplant procedure, making her the first known patient in the US to receive such a transplant after surviving COVID-19. She was discharged from the hospital on July 8th, but has continued to receive occupational and physical therapy after the procedure.

Mayra Ramirez received a double-lung transplant after experiencing severe lung damage due to COVID-19

Ankit Bharat, MD, Surgical Director of the Northwestern Medicine Lung Transplant Program, stated “When we opened Mayra’s chest cavity, large parts of her lungs were necrotic and filled with infection. The severe damage and inflammation to the lungs had caused pressure overload on the heart which further made the surgery quite complex…Nevertheless, the success of [the transplant] emphasizes that surgical innovation can also play an important role in helping some critically ill COVID-19 patients.”

Mayra Ramirez stands alongside Dr. Bharat and Dr. Tomic, two of the medical professionals from Northwestern Medicine who aided her in the fight against COVID-19

When asked about her experience with COVID-19, and what she would want others to know about the disease, Ramirez says, “People need to understand that COVID-19 is real. What happened to me can happen to you. So please, wear a mask and wash your hands. If not for you, then do it for others.”

To learn more about Mayra’s story and her experience as an autoimmune patient with coronavirus, please visit the Northwestern Medicine website.

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Dutch Skating Champion Lara van Rujiven Dies from Autoimmune Disease

Speed skating champion Lara van Rujiven passed away from complications due to an autoimmune disease on Friday night, the Dutch Speed Skating Association KNSB has reported.

The 27-year-old gold medalist athlete was admitted to a hospital in Perpignan, France on June 25 with symptoms indicating that her immune system was compromised. She began to experience internal bleeding, including in her brain, and underwent two operations while being kept in an artificial coma.

Sadly, van Rujiven eventually succumbed to complications of her autoimmune disease. While the exact nature of her autoimmune condition is unknown, some have speculated that she suffered from autoimmune encephalitis, vasculitis, idiopathic thrombocytopenic purpura (ITP), lupus, or one of the many other autoimmune conditions which can cause internal bleeding.

Image

Van Rujiven won the gold medal for the 500-metre short track skating championship in 2019 in Bulgaria, becoming the first woman from the Netherlands to do so.

Fans and fellow athletes alike took to social media to express their sadness about her passing. “What terrible news we’ve just received. The loss will be felt in the sports world,” Dutch national coach Jeroen Otter said.

On behalf of Autoimmune Warrior, I’d like to send our condolences to Lara’s family. Her story demonstrates that autoimmune disease really has no bounds, and can affect even the strongest among us in the prime of their life. Rest in peace, Lara – you’ve made the Netherlands proud!

10 Facts about Crohn’s Disease

According to the Crohn’s & Colitis Foundation, Crohn’s is a chronic inflammatory condition of the gastrointestinal tract. Read on to learn 10 interesting facts about this autoimmune condition.

1. It’s more common than you think

An estimated 3 million Americans suffer from autoimmune diseases of the digestive tract, referred to as Inflammatory Bowel Disease (IBD). These conditions include Crohn’s disease, Celiac disease and Ulcerative Colitis. Women and men are equally likely to be affected by Crohn’s disease, unlike many other autoimmune conditions which are more prevalent among females.

2. Crohn’s affects patients early in life

Unlike some autoimmune diseases, such as Sjogren’s Syndrome, which are more likely to develop during middle-age, Crohn’s tends to develop early in a patient’s life. Most commonly, the disease will occur in one’s teens or twenties, though some patients can experience symptoms even earlier. According to WebMD, while most people are diagnosed before age 30, the disease can still occur in people in their 60s and beyond.

3. The gastrointestinal symptoms can be debilitating

The most common symptoms of Crohn’s are gastrointestinal in nature. These symptoms include abdominal cramps, diarrhea, weight loss, anemia and delayed growth (especially in younger children). There are actually different types of Crohn’s disease depending on which part of the gastrointestinal tract is affected, and each subtype has its own specific symptoms.

4. Non-Gastrointestinal symptoms are also problematic

Crohn’s patients sometimes experience symptoms that aren’t gastrointestinal in nature, and which are often more problematic than their bowel issues. These symptoms include: fever, colitic arthritis (which migrates along the body and affects one’s knees, ankles, hips, wrists and elbows), pericholangitis (an inflammation of the tissues around the bile ducts), kidney stones, urinary tract complications, and fistulas (abnormal connections between body parts, such as organs and blood vessels).

5. It can greatly impact one’s quality of life

According to the Crohn’s & Colitis Foundation, autoimmune conditions of the digestive tract can highly impact one’s quality of life. For example, the Foundation shared the story of Paige, who was diagnosed with Crohn’s at age 20. Paige had lost 40 lbs on her already petite frame as a result of the disease, and she even had difficulty standing up, since her muscles had become accustomed to her being doubled over in pain. Thankfully, by participating in clinical trials, Paige’s condition is now improving, and she’s regaining her quality of life.

6. The condition can impact one’s mental health too

The Crohn’s & Colitis Foundation states that rates of depression are higher among patients with Crohn’s disease and ulcerative colitis as compared to other diseases and the general population. Furthermore, anxiety is also common among patients who have IBD. Dr. Megan Riehl, a clinical psychologist with the University of Michigan’s Department of Gastroenterology, explains that stress and anxiety can contribute to ‘flares’ of the disease. She also says it’s imperative for patients to find ways to cope with living with a chronic illness, such as cognitive behavioral therapy.

7. A comprehensive physical exam is necessary for a Crohn’s diagnosis

A number of advanced diagnostic tools are used to determine if a patient has Crohn’s disease. These diagnostic procedures include: imaging scans and endoscopic procedures. Imaging scans involve CT scans or specialized X-rays to view your colon and ileum (a portion of the small intestine). Endoscopic procedures, such as a flexible sigmoidoscopy or a colonoscopy, involve the insertion of a tube into one’s rectum, lower colon or entire colon to examine the area in detail.

8. Crohn’s may be genetic in nature

According to John Hopkins Medicine, Crohn’s may be genetic, especially considering it’s more prevalent among people of certain ethnic groups. For example, people of Ashkenazi Jewish descent are at a greater risk of having the disease compared to the general population. In addition, a genetic cause is suspected, since studies have shown that between 1.5% and 28% of people with IBD have a first-degree relative, such as a parent, child or sibling who also has the disease.

9. Environmental triggers for Crohn’s may also be responsible

According to the Crohn’s & Colitis Foundation, the lack of complete gene penetrance and the rapid rise of IBD incidence in certain geographic regions suggests that both genetic and environmental factors contribute to this condition. Several environmental triggers currently being studied include: diet, smoking, viruses and psychological stress.

10. There is hope

If you or someone you know has Crohn’s disease, it is important to get support for your condition. In addition to working closely alongside a team of medical professionals to get the right treatment, patients are encouraged to find a local support group where they can connect with others who are living with the condition. Moreover, patients should consider taking advantage of the many patient resources out there, such as the Crohn’s and Colitis online community, the IBDVisible blog and the patient stories center. Remember, you’re not alone in the fight against Crohn’s!

Thank you for stopping by Autoimmune Warrior. If you found this article to be informative, please like, share, and comment below!

What is Medical Gaslighting?

“Maybe it’s just all in my head?”

That was the question Isabella Rosario asked herself after unsuccessfully trying to get a diagnosis for her numerous debilitating symptoms for over a year-long period. These concerning symptoms included migraines, joint dislocations, chest pain, lightheadedness, pneumonia and more. When she first saw a doctor at her university clinic, and later, her GP, she was told what she was experiencing was due to stress related to her studies, and completely psychological in nature. Eventually, after seeing numerous specialists, she was diagnosed with two chronic health conditions – hypermobility spectrum disorder (HPD) and postural orthostatic tachycardia syndrome (POTS). 

Isabella was fortunate to eventually get a diagnosis, but other chronic illness sufferers are not so lucky. Many medical professionals routinely dismiss their patients’ ailments and concerns – a phenomenon known as medical gaslighting. Eventually, patients who have been gaslit will begin to question their own sanity and wonder if their health problems are actually ‘real’ or just a figment of their own imagination.

According to the blog A Journey Through the Fog, medical gaslighting can take many forms, including:

  • Minimizing debilitating or dangerous symptoms. – “Your pain can’t be that bad
  • Blaming symptoms on mental illness. – “It’s all in your head” 
  • Assuming a diagnosis based on sex, race, identity, age, gender, ethnicity or weight. – “If you lost weight, your symptoms would disappear
  • Refusing to order important tests or imaging work. – “I know you don’t have [condition], I do not need an MRI to tell me this. I know how to do my job
  • Refusing to discuss the health issues with the patient. Berating patients for trying to self-diagnose. – “Who’s the doctor here, me or Google?” 

Throughout the course of my journey to being diagnosed with various autoimmune diseases and chronic illnesses, including Sjogren’s Syndrome, Hidradenitis Suppurativa and Benign Fasciculation Syndrome, my symptoms were either minimized or completely discounted by medical professionals. As I detail in the blog post, When Your Doctor Doesn’t Believe You, when I first brought up joint pain in my hands to my GP at age 19, he accused me of ‘texting too much’ when in reality, I had undiagnosed Sjogren’s Syndrome that was quickly developing into Rheumatoid Arthritis (RA).

In another instance, I needed a referral to see a Rheumatologist. When the nurse checked me in and asked about the reason for the visit, she said, ‘How does someone your age need to see a Rheumatologist? Did you wear high heels too much in high school?’ This kind of comment is not only rude and uncalled for, but patronizing and dismissive as well. People of all ages can experience a myriad of health issues, and should be taken seriously.

Last year, a video posted by a nurse on the popular social media platform TikTok drew outrage among the chronic illness community. The video featured a nurse imitating a patient struggling to breathe, while the nurse refused to help. She then captioned the video with the words: “We know when y’all are faking’. The video prompted many chronic illness patients to respond recounting their own stories of medical gaslighting, using the hashtag #PatientsAreNotFaking.

According to healthline.com, women are more likely to have their pain described as ’emotional’ or psychological in nature. Meanwhile, patients of color are less likely to be thoroughly examined as compared to their white counterparts. This systemic sexism and racism in the healthcare industry was also pointed out by many using the same hashtag:

In order for patients to get the healthcare they need (and deserve), medical professionals need to take their patients seriously; and that includes listening to their experiences, being compassionate, and issuing the necessary examinations and other tests needed to get an accurate diagnosis. My hope is that if you’ve ever experienced medical gaslighting, that you remain assertive and find a healthcare team that will take the necessary action to diagnose and treat your illness.

Have you experienced medical gaslighting before? If so, comment below to share your experience.

Video: Living with Autoimmune Diseases

Below is a video from the YouTube channel Our Grandfather Story (OGS), which raises awareness about overlooked stories across Southeast Asia. In this video, OGS interviews people with autoimmune diseases to ask them questions like, “Are you really sick?” “Can you be cured?” and “Should I pity you?” I found the video to be very relatable, especially as someone with an invisible illness, and I liked how they talked about some of the mental health impacts of chronic illness as well.

The participants in the video live with the following conditions: myasthenia gravis (MG), primary sclerosing cholangitis, autoimmune hepatitis, ulcerative colitis, autoimmune encephalitis, and lupus nephritis.

Thank you to OGS for raising awareness about autoimmune diseases; I hope my readers enjoy the video as much as I did!

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American Family to Immigrate to Canada After Type 1 Diabetes Diagnosis

The Reseburgs have applied to immigrate to Canada as a result of their daughter’s medical diagnosis. Photo courtesy of the Canadian Broadcasting Corporation (CBC).

Amanda Reseburg and her husband of Janesville, Wisconsin, have applied to immigrate to Nova Scotia, a province in Atlantic Canada. While Reseburg has always admired the region’s coastal views, the beautiful scenery is not the reason for her family’s desire to move.

Reseburg’s nine-year-old daughter, Molly, was diagnosed with Type 1 diabetes, an autoimmune condition in which the body’s own immune system destroys insulin-producing cells, called islets, in the pancreas. Consequently, the body produces little to no insulin, an important hormone that enables glucose to enter cells and produce energy. Symptoms of the condition can include fatigue and weakness, blurred vision, unintended weight loss, extreme hunger, increased thirst and frequent urination, among other complications.

The family is hoping that by moving to the Canadian province, they will receive better insurance coverage and more affordable insulin. Reseburg says her daughter takes six to 10 needles a day of long-acting and short-acting insulin. She is also using a continuous glucose monitoring system, which monitors her blood sugar levels and must be replaced every 10 days.

Reseburg says they have been fortunate thus far- their family has medical coverage through her husband’s employment. However, given the current state of the economy and how closely medical insurance is tied to employment in the United States, she wonders what would happen if he were to lose his job.

Nine-year-old Molly Reseburg was diagnosed with Type 1 diabetes, an autoimmune disease impacting her insulin levels. Photo courtesy of the Canadian Broadcasting Corporation (CBC).

Another consideration is that once their daughter becomes an adult, she may no longer be eligible to be on their insurance coverage. Reseburg said, “I don’t want to tell my kids, ‘Go find a good office job.’ I want them to be able to do what they want to do, and not have to worry about insurance.”

The affordability of insulin is another concern. While she has never had to go across the border to buy insulin, she understands why people do it. “I don’t see America getting on board [affordable insulin] any time soon, so that’s why we’re looking to move,” she explained.

Reseburg has also been frustrated with the lack of consumer choice with her daughter’s medication. Several months ago, her insurance company informed her that they would no longer be covering the insulin her daughter currently takes, and would be switching her to a new type of insulin instead. “We don’t get any say in that whatsoever. They decide what insulin they will allow us to have,” she lamented.

This is particularly concerning due to the fact that her daughter Molly also suffers from a chromosomal condition called Turner syndrome, which impacts the effectiveness of the insulin she takes. And, not only was the type of insulin changed, but the insurance company is covering $75 less, resulting in the family having to pay even more out of pocket for this necessary treatment.

The family has retained an immigration lawyer to help them with their Canadian immigration application. On top of attorney fees, the immigration fees cost several thousand dollars, plus extensive paperwork detailing how the family will be able to adapt to their new country and how they plan to contribute to the economy. The mountain of paperwork is worth it, however, since the family says that if their application is successful, their daughter’s insulin will be covered and she’ll no longer be at the mercy of their insurance company.

While it usually takes about two years to immigrate to Canada, the COVID-19 situation could draw out the process even longer. Nevertheless, the family is hopeful that their plan will pan out. “We’ll get their eventually,” Reseburg said.

Thanks for stopping by Autoimmune Warrior! If you enjoyed this story, please consider commenting below and sharing this article with your friends and family.

What is Spoon Theory?

The term ‘spoon theory’ was coined by Long Island, New York based blogger Christine Miserandino, a chronic illness advocate living with systemic lupus erythmatosus (SLE). The theory states that those with chronic illness only have so many ‘spoons’, or units of energy, available to them in order to accomplish their daily tasks. This is in contrast to healthy, able-bodied individuals, who have a much greater supply of ‘spoons’ that allow them to achieve all that they need to get done throughout the day.

Christine first created the term after she tried explaining to a friend what it was like to live with the autoimmune disease lupus. After having some difficulty explaining how she lived with chronic pain, chronic fatigue, and challenging symptoms, she realized that it would be easier to explain her disease if she had a visual aid. This is when she handed her friend 12 spoons to represent units of energy, and took each spoon away as her friend described every activity that she had to do throughout the day, including routine items like doing the groceries, cooking a meal, showering, and even getting out of bed. Her friend quickly realized that she didn’t have enough spoons to complete all the necessary tasks in her daily life, and had to make difficult choices, like whether to eat dinner or run an errand instead.

Christine later decided to write a post on her blog But You Don’t Look Sick, to describe her interaction with her friend and the creation of the ‘spoon theory’. This also lead to the development of the term ‘spoonie’, to describe someone with a chronic illness who has to make difficult choices throughout their daily lives on what they will and won’t be able to do.

I think that spoon theory is an excellent way to describe what it’s like to live with an autoimmune disease to any healthy, able-bodied person who may not otherwise understand what you’re going through. This is especially true if you have an invisible illness (when you don’t have any obvious outward symptoms), and others perceive you as lazy, inconsistent, or having poor time management skills.

One of the most difficult aspects of having limited ‘spoons’ is that some friends or family members may not understand why you can’t do certain things, like go out for a fun night on the town on a Friday after work, or why you can’t run a 5k with them, or be a bridesmaid at their week-long destination wedding. These are tough decisions that any spoonie or autoimmune warrior has to make, but, they’re just part of the reality of living with a chronic illness.

On a more positive note, sometimes, have limited ‘spoons’ does force us to choose the things that really matter in life. Maybe you don’t want to go to your Great Aunt’s potluck, but if you were perfectly healthy, you would have begrudgingly gone, just to be nice. But when you live with chronic pain, fatigue and other symptoms, you don’t have the luxury of being a ‘yes-man’ (or woman). You have to decide what is worth your time and what isn’t.

This sentiment was echoed by Estrella Bibbey in the video, Sjogren’s Syndrome: A Place to Begin, when describing her life with Sjogren’s Syndrome. “This kind of illness makes you slow down, it makes you choose wisely, and it makes you want to conserve your energy for the very best things,” she said. “I don’t live my life just willy-nilly, [like] we’re going to do whatever and just pick up the pieces later. It’s a more controlled experience, but we choose the really good things and we make sure our energies are focused on the really good events. When we commit to going to a birthday party, or some other kind of social event, we commit to it and we are really excited to be there, and we made a space in our lives to be there.”

If you’re a spoonie (like me) and I had to give you one piece of advice, I would say to practice self-care, be kind to yourself, and make sure you’re using your limited spoons wisely.

What do you think of the term ‘spoon theory’? Does it accurately describe your life as an autoimmune warrior? Have you ever had to make a difficult decision about using your ‘spoons’? Comment below and let me know!

Is This Illness Related to COVID-19 Autoimmune?

Healthcare professionals are grappling with the effects of pediatric multisystem inflammatory syndrome (MICS), a complication of COVID-19 in children

Across the world, disturbing reports are coming through detailing a new complication thought to be related to COVID-19 that is affecting children with the virus. The illness, called pediatric multisystem inflammatory syndrome, or MICS for short, causes the immune system to overreact, leading to dangerously high levels of inflammation throughout the body. It impacts the body’s major organs, including the heart, liver, and kidneys, among other parts of the body.

Juliet Daly, a 12-year old girl from Louisiana, was diagnosed with both COVID-19 and MICS after going through cardiac arrest. Thankfully, she was airlifted to a children’s hospital, where she was put on a ventilator until she could breath on her own and her heart and other organs had recovered.

Juliet Daly was diagnosed with COVID-19 and pediatric multisystem inflammatory syndrome after being admitted to the hospital. Image courtesy of CNN.

Pediatric multisystem inflammatory sundrome has been compared to Kawasaki disease, an inflammatory condition primarily found in children under age five that impacts the heart’s coronary arteries. Kawsaki disease can lead to complications like artery enlargement, aneurysms, issues with the lymph nodes, skin, and the lining of the nose, throat and mouth. Some experts hypothesize that the coronavirus could be a trigger for Kawasaki disease. A recent study done in Bergamo, Italy found that the incidence of a ‘severe, Kawasaki-like disease’ increased 30-fold after the virus broke out in the region, further supporting this theory.

Pediatric multisystem inflammatory syndrome also bears the hallmarks of a cytokine storm, a phenomenon in which the body’s immune system overreacts to the virus and mounts a harmful inflammatory response in the body.

This raises the question, is MICS autoimmune in nature? While little is known about the condition, Dr. Randall Williams, Director of the Missouri Department of Health and Senior Services, said during a recent press conference that the condition is an “autoimmune reaction“, and that “it’s basically where your body reacts to an antigen and starts attacking itself.”

The relationship between viruses and autoimmune disease has been studied in the past. For example, studies have found a link between the Epstein-Barr virus (EBV) and the pathogenesis of a number of autoimmune diseases including lupus, multiple sclerosis, rheumatoid arthritis, juvenile idiopathic arthritis, inflammatory bowel disease, type 1 diabetes, and celiac disease.

Though there isn’t a cure for MICS, it’s treated by giving patients steroid and intravenous medications commonly issued to patients with an autoimmune disease, in an effort to decrease damaging inflammation.

While the coronavirus has proven to be less common and less deadly in children than adults, two young children and a teen with COVID-19 who showed Kawasaki disease symptoms have died in the state of New York. As a result, parents are advised to take precautions and contact their pediatrician or family medicine provider if your child has a fever to determine the best next steps.

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Autoimmune Disease on the Rise in the United States

An April 2020 study published in Arthritis and Rheumatology suggests that autoimmune disease is on the rise in the United States.

In the study, researchers found that the prevalence of the most common biomarkers of autoimmune disease, called antinuclear antibodies (ANAs), is significantly increasing in the U.S. overall as well as among certain populations. These affected populations include:

  • Men
  • Non-Hispanic whites
  • Adolescents
  • Adults 50 year and older

The researchers examined over 14,000 patients ages 12 and up over the course of three time periods spanning 30 years. In this time frame, they discovered that the overall frequency of ANAs in their test subjects went from 11% affected individuals to almost 16% affected. The worst affected population was the adolescent group, who experienced a nearly three-fold increase in ANA rates over the course of the study period.

While the exact cause of autoimmune disease remains unknown, many scientists believe that a combination of genetic and environmental factors is responsible. However, the researchers in the study state that because people have not changed much genetically over the past 30 years, it is more likely that lifestyle or environmental factors are responsible for the ANA increases.

Christine Parks, PhD, is one of the researchers involved in the study who focuses on the environmental causes of rheumatoid arthritis (RA) and other autoimmune diseases. “These new findings…will help us design studies to better understand why some people develop autoimmune diseases,” she said. She also added that there are over 100 chronic, debilitating autoimmune conditions that could stand to benefit from further research.

Donna Jackson Nakazawa, a Maryland-based science journalist and author of the book The Autoimmune Epidemic, believes that our ever-increasing exposure to chemicals, heavy metals, and viruses, coupled with stress, dietary and other lifestyle factors, is primarily to blame for the increase in autoimmune disease. She also points out that there may be a connection between autoimmune disease and allergies, which are also skyrocketing.

Nakazawa herself suffers from Guillain-Barre Syndrome, a paralyzing autoimmune disease similar to multiple sclerosis (MS). In her latest book, The Last Best Cure, she states that experts predict that the number of Americans who suffer from chronic conditions will rise an astonishing 37% by 2030.

While this may not sound like positive news, one good thing is that with an increase in autoimmune disease, more scientists, medical professionals and pharmaceutical companies will be encouraged to undertake research to find treatments and, ultimately, a cure for autoimmunity. I personally am hopeful that we will see enormous strides in biotechnology in my lifetime.

Are you surprised by the increase in autoimmune disease in the U.S.? Let us know in the comments below!

Why Autoimmune Patients with COVID-19 Should Beware of the Cytokine Storm

As the SARS-CoV-2 virus responsible for the COVID-19 disease continues to infect people and claim lives across the globe, scientists and medical professionals are learning more about its impact on patients.

One interesting phenomenon that’s been observed is that some coronavirus patients experience relatively mild to moderate symptoms, while others experience severe, life-threatening problems that can land them in the ER. According to Sharp Health News, the virus itself may not be entirely to blame for this, but rather, an overreaction by the body’s immune system.

When a foreign agent, such as a virus, invades your body, your immune cells secrete cytokines, which are molecules that initiate an immune response. However, in some cases, immune cells continue to secrete cytokines, even after a sufficient immune response has been mounted. This is called a ‘cytokine storm’ and the overproduction of these molecules can cause a harmful inflammatory response in the body.

Certain people are more susceptible to cytokine storms than others; for example, there is evidence that those with genetic mutations in their immune cells are more vulnerable. According to creakyjoints.org, those with autoimmune conditions often have abnormally high levels of these cytokines, which is why autoimmune patients often take immune-suppressing medications. However, a cytokine storm isn’t the same as an autoimmune disease flare, though they can be related.

As detailed by creakyjoints.org, some autoimmune patients end up with cytokine storms unrelated to COVID-19. Dr. Randy Cron, a pediatric rheumatologist and author of the book Cytokine Storm Syndrome commented, “About 10% of patients with juvenile idiopathic arthritis will experience [a cytokine storm]; in some cases, multiple times.”

With regards to COVID-19, which is respiratory in nature, a cytokine storm can gravely impact a patient. Acute lung injury (ALI) is a common consequence of a cytokine storm occurring in the lungs, and if a lung infection is severe, the inflammation will spread to the rest of the body via one’s blood circulation and cause sepsis. In some cases, the immune response to an infection can even be deadly.

That’s why it’s important to ‘calm the storm’ and prevent a cytokine storm before it even happens. One type of treatment being explored for COVID-19 is hydroxychloroquine, which is an antiviral and immunosuppressant drug used to treat malaria and autoimmune diseases like lupus, rheumatoid arthritis (RA) and Sjogren’s. Although the medication is still undergoing clinical trials, many are hopeful that this drug will serve as a treatment to halt the progression of COVID-19.

Besides pharmaceutical therapies, Sharp Health News cites curcumin, a compound found in turmeric, as beneficial for its anti-inflammatory properties. A 2015 study states that in lab experiments, researchers found that curcumin blocked the release of the cytokines that are responsible for inflammation.

All in all, it’s important for autoimmune patients to guard against the coronavirus by adhering to strict hygiene guidelines, such as hand washing thoroughly with soap and water, avoiding close contact with others, and disinfecting surfaces routinely. Remember, prevention is the best form of treatment, and can help those with autoimmune disease to avoid a damaging cytokine storm.

10 Facts About Hidradenitis Suppurativa

According to the Hidrandenitis Suppurativa (HS) Foundation, HS is a chronic, painful skin disease that causes boils to form in the folds of the skin and has a profound impact on quality of life. Read out to find out 10 facts about this chronic autoimmune condition.

1. Hidradenitis Suppurativa (HS) is a common disease

Although HS was once thought to be a rare disease, peer-reviewed medical journals have stated that HS affects approximately 1-4% of the world’s population, when taking into account all the stages of the disease. This means that there are millions of individuals living with this skin condition.

2. It affects certain areas of the skin

HS commonly occurs in the areas of the skin that rub together, such as the armpits (axillae), groin, buttocks, and underneath the breasts. These areas are rich in apocrine glands, which produce sweat, and have many hair follicles which can get obstructed. These obstructed follicles will then progress into pus-filled abscesses and boils. The boils can feel like hard lumps, or clusters of inflamed lesions and sinus tracts (called ‘tunnels’) which give off chronic seepage and can scar.

3. HS is classified into three stages

HS is classified into three stages called Hurley Staging. This classification method allows medical professionals to assign a severity level to HS. The three stages are:

  • Hurley stage I – a single lesion without a sinus tract (‘tunnel’) formation
  • Hurley stage II – multiple lesions or areas impacted, but with limited tunneling
  • Hurley stage III – multiple lesions involving an entire area of the body, with more extensive sinus tract formations and scarring.

Keep in mind that these stages don’t necessarily take into account disease activity, measure pain, or the impact on one’s quality of life.

4. There are several risk factors

The exact cause of HS is unknown. However, experts believe that the condition is connected to hormones, genetics, and autoimmune issues. HS is not caused by an infection or poor hygiene, and it isn’t contagious.

Though the exact cause isn’t known, there are a number of risk factors that can increase one’s likelihood of developing the disease, including:

  • Sex – Women are about three times more likely to develop HS than men.
  • Age – HS most commonly occurs in women between the ages of 18 and 29. It rarely occurs before puberty, though individuals who develop the condition at an early age may be at an increased risk of developing more widespread disease.
  • Family history – It’s believed that inherited genes may play a role.

5. Lifestyle factors also impact the disease

There are also lifestyle factors that can impact the disease, including:

  • Obesity – Several studies have shown a correlation between being overweight and HS. This may be due to increased friction on one’s body and being more prone to excessive perspiration.
  • Smoking – Smoking tobacco has been linked to HS as well.

As a result, it’s recommended for patients to maintain a healthy weight and to refrain from smoking.

6. HS can cause various complications

Persistent HS, especially when severe, can cause a number of complications, including skin infections and scars. The scarring can also interfere with lymph drainage, which can result in swelling in the arms, legs, or genital region. Sores and scar tissue can also restrict one’s movements, or make it too painful to move, especially when the disease impacts the armpits or groin area.

7. HS can also impact one’s mental health

HS can also impact one’s self-esteem and well being. For example, the location of the skin lesions, as well as issues like drainage, scarring, and malodorous smell can cause embarrassment, and make patients reluctant to go out in public or engage in activities that may reveal their skin, such as swimming. The resulting social isolation can lead to overwhelming sadness or even depression. In fact, many patients with HS go undiagnosed for years because they are too ashamed to speak with a health care provider about their symptoms.

8. HS occurs in tandem with several conditions

According to the HS Foundation, research has found that certain health conditions (called ‘comorbidities’) commonly occur in tandem with HS. These conditions include metabolic syndrome, polycystic ovarian syndrome (PCOS), diabetes, inflammatory bowel disease, heart disease, acne, and more. HS is sometimes referred to in other countries as ‘acne inversa’, although it isn’t a type of acne.

9. There is no cure, but treatments can help

Treatment for HS depends on what clinical stage a patient is in and the severity of their condition. Mild HS is treated with antibacterial soaps, anti-inflammatory medications, and warm compresses. It’s also recommended to wear loose-fitting clothing. More severe forms of the disease may require antibiotics, oral retinoids, anti-inflammatory drugs, corticosteroids, hormones, and TNF-alpha inhibitors. Other treatments include laser hair removal, radiation therapy, carbon dioxide laser therapy and surgery to remove the affected area.

10. There is hope

If you or a loved one has been diagnosed with Hidradenitis Suppurativa, visit the Hope for HS website, which has an extensive library of patient resources, including information about wound care and listings for nationwide support groups. The organization also lists out clinical trials that patients can participate in, as well as recent research and news items, so that you can stay on top of the latest developments about the disease.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share and comment below!

April is Sjogren’s Awareness Month; Read My Story

Hello Autoimmune Warriors! I hope you’ve all had a great start to April, despite the coronavirus pandemic that we all find ourselves in. April is actually Sjogren’s Syndrome awareness month, and as such, I wanted to share my own story battling this autoimmune disease here on the blog as well as on social media.

Name: Isabel

Current age: 27

Age when diagnosed: 20

City/State: San Diego, California

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”

…that self-care is extremely important when you have a chronic illness. After I was first diagnosed, I continued to push myself physically, academically and professionally the way I would have pre-diagnosis. But it’s really important to listen to your body and take it easy sometimes, even if that means it will take longer to accomplish your goals.

What are your most difficult symptoms?

Right now, joint pain, particularly in my hands, is my most challenging symptom. However, eye and mouth dryness, fatigue, and brain fog have been difficult for me as well.

How has Sjögren’s affected your life and how have you been able to effectively cope with the complexity of symptoms?

It takes me longer to accomplish tasks than it did before, due to chronic pain and fatigue. I have to go to the dentist a lot to take care of my oral hygiene, and I see different specialists for each of my symptoms. I also take various medications to cope with symptoms like dryness and joint pain. Other than taking medications, I cope with the symptoms by connecting with others living with the disease on social media and through my blog, autoimmunewarrior.org.

What do you wish people knew about your Sjögren’s?

It’s not just dry eyes and mouth, and even those symptoms can be debilitating if they’re severe enough. This disease involves the whole body, and it’s a lot more than just a small ‘nuisance’, which is what it’s often portrayed to be.

Given recent global events amid the coronavirus/COVID-19, do you have any specific concerns because of Sjögren’s? 

As part of my treatment plan, I take immunosuppressant medication, which I’m afraid puts me at greater risk of not being able to fight off an infection, like COVID-19, if I were to catch it.

What’s your best Sjögren’s tip?

Find a team of medical professionals, including a rheumatologist and dentist, who are knowledgeable about Sjogren’s and have experience treating this disease specifically. Unfortunately, based on personal experience, I’ve found that few medical professionals are truly educated about the impact that Sjogren’s has on patients, so it’s important to connect with those that really understand the complexity of the disease and how it manifests.

Thank you for reading my story! If you’d like to learn more about how I was diagnosed with Sjogren’s, please visit the following article: My Struggle with Autoimmunity: Part 1.

If you’d like to share your own story, please visit the This Is Sjogren’s webpage on the Sjogren’s Foundation website to learn how you can be a part of the #ThisIsSjogrens awareness campaign.

Critical Autoimmune Treatment Becomes Scarce as Trump Touts Possible COVID-19 Benefits

A health care professional holds up Plaquenil, which is being explored as an experimental treatment for COVID-19 (Photo credit: The New York Post).

Last week, I stopped by the pharmacy to pick up my prescriptions – a normal occurrence for any autoimmune disease patient. As I waited in line, a heard a young woman ask for Plaquenil, an anti-malaria drug commonly used to treat autoimmune conditions such as lupus, rheumatoid arthritis (RA), and Sjogren’s Syndrome.

Unfortunately, the pharmacist responded that they were completely out of Plaquenil, and they weren’t sure when they were going to have the medication in stock again. The patient, looking upset, left the pharmacy empty-handed.

It’s no surprise that Plaquenil, and its generic counterpart, Hydroxychloroquine, is in short supply. During recent press conferences, President Trump claimed that the drug had potential to treat those suffering from COVID-19, the disease caused by the novel coronavirus. He was swiftly contradicted by his top infectious diseases adviser, Dr. Anthony Fauci, who said that the evidence that the drug was helpful for the virus was anecdotal at best.

Despite the experimental nature of the drug for treating COVID-19, this hasn’t stopped people from trying to stockpile the drug. In fact, a recent New York Times article stated that pharmacy boards have discovered that doctors are hoarding the medication by writing prescriptions for themselves and their family members. The situation is especially dire in the states of Idaho, Kentucky, Ohio, Nevada, Oklahoma, North Carolina, and Texas.

The American Medical Association’s president, Dr. Patrice Harris, denounced the practice, saying that the association “is calling for a stop to any inappropriate prescription and ordering of medications…and appealing to physicians and all health care professionals to follow the highest standards of professionalism and ethics.”

As a result, a number of pharmaceutical boards have imposed restrictions, such as barring pharmacies from dispensing both chloroquine and hydroxychloroquine unless the prescription includes a written diagnosis of a condition that the drugs have been proven to treat. Other rules include limiting the prescription to a 14-day supply unless a patient has previously taken the medication.

Still, not every state’s board has taken action to ensure that the drug is made readily available to autoimmune disease patients. As a result, the Lupus Foundation of America, Arthritis Foundation, and other medical associations have issued a joint statement urging the White House to ensure access to the medication during the COVID-19 crisis, citing the fact that it is the only known drug shown to increase survival in patients with lupus.

For Sue Hauk, a 48-year-old lupus patient from Conshohocken, Pennsylvania, Plaquenil has been a lifesaver. Her main lupus symptoms include: joint pain, chest pain, fatigue, and nausea, which this medication helps to keep in check. When she first heard reports of the medication being scarce, she contacted her pharmacy to request a refill of her prescription, but they couldn’t offer her more than a five day supply. She then called seven different in-state pharmacies, and then five out-of-state pharmacies – each were either out of stock, or refused to fill her prescription since she wasn’t an existing customer.

“I thought, that can’t happen to me, because I’m on this and this is my life-sustaining drug. If I can’t find more, once it’s out of my system I don’t know what will happen,” Hauk said. “I’m at a loss right now.”

Sue Hauk, a lupus patient, is concerned that she won’t have access to her life-saving medication due to the COVID-19 pandemic (Photo credit: PBS).

There are over 1.5 million Americans living with the autoimmune disease lupus, who could be adversely impacted by the unnecessary stockpiling of this medication. While it’s funny to joke about people stockpiling items like toilet paper, hoarding medication has much more serious consequences.

Samantha Wayne, another lupus patient who has been taking the drug for the last 12 years, said in her YouTube video that hydroxychloroquine ensures that her symptoms don’t flare up and cause more inflammatory damage. She says it also prevents many patients from having to utilize more intensive therapies, such as immunosuppressant organ transplant drugs or chemotherapy. She also points out that this may be the only treatment deemed safe for use for pregnant autoimmune patients. She concludes the video stating that while she’s concerned about finding a way to combat the coronavirus, “those of us with autoimmune issues, such as lupus, we matter too.”

Samantha Wayne, a lupus patient and YouTuber, is raising awareness about the consequences of autoimmune patients not having access to hydroxychloroquine (Photo credit: Live Hope Lupus).

Cindy Messerle, CEO of the Lupus Foundation of America‘s Philadelphia Chapter, echoed those sentiments, saying, “I do hope that a treatment for COVID-19 is found ASAP. If it happens to be with hydroxychloroquine, the important thing is that people who take in on a daily basis for lupus and other autoimmune diseases have uninterrupted access to their medication.”

To read more about our coronavirus coverage, check out the following blog posts:

Young Autoimmune Patients Raise Awareness Amid COVID-19 Pandemic

As the COVID-19 pandemic continues to spread across the globe, young patients with autoimmune disease and other chronic illnesses are using the hashtag #HighRiskCovid19 to raise awareness about their conditions.

Although many media outlets and government officials have stated that young individuals need not worry about the coronavirus, and that it’s primarily older individuals who are the most at risk, immunocompromised young people are telling their own story. Whether they take immunosuppressants for their condition, or are at risk due to the nature of their chronic illness, these patients are asking their peers to keep them in mind when they consider venturing out instead of remaining in self-isolation.

Brittania, a 20-year old young woman from Jamaica, tweeted: ‘Hi, I’m 20 and I have Systemic Lupus Erythmatosus (SLE)/Lupus Nephritis. I take immunosuppressants to keep my body from attacking itself. I’m amongst those who have to self-isolate to stay healthy for a majority of this year. So please keep me/others in mind when you think you ‘can’t stay in’.

Sarah Elliott, from San Francisco, California, added: ‘I have multiple sclerosis (MS) and take an immunosuppressant drug for it. I also have severe asthma and take a controller medication as well. I have 2 kids and I would love to watch them grow up. Please help protect us!’

Nancy Mendoza, an autoimmune patient with Rheumatoid Arthritis (RA), also tweeted: ‘I’ve been on immunosuppressing meds for 15 years for rheumatoid arthritis. Stay home. Flatten the curve. People like me are depending on you.’

Others decided to use the trending hashtag to raise awareness on behalf of a loved one with a chronic illness. A man from Medicine Hat, Alberta, Canada, for example, implored: ‘This is my wife. She is on immunosuppressive infusion therapy battling ulcerative colitis and rheumatoid arthritis. She is among the high risk during this COVID-19 pandemic. I’m putting a face to the most vulnerable. TAKE THIS SERIOUSLY.’

Personally, I am also taking greater precautions as the coronavirus spreads further into our communities, since I take immunosupressant medication for Sjogren’s Syndrome and Hidradenitis Suppurativa. I also have asthma, which puts me at a greater risk for serious pulmonary complications, like pneumonia, since the virus is respiratory in nature. Thankfully, I’m able to work remotely, limiting my exposure to others, and my husband has taken on any duties that require us to set foot outside, including grocery shopping.

Do you or someone you love have an autoimmune disease, and are therefore at a greater risk for complications associated with the coronavirus? If so, please comment below and let us know how you’re handling this public health scare as a #HighRiskCovid19 patient.

Autoimmune Patients Urge Public to Take Coronavirus Seriously

Close-up image of the coronavirus (COVID-19) from the Centers for Disease Control & Prevention.
Image of the coronavirus (COVID-19) courtesy of the Centers for Disease Control and Prevention (CDC).

The coronavirus (COVID-19) pandemic has taken the world by storm, causing what many perceive to be a case of mass hysteria. But for those living with a compromised immune system, the ‘hysteria’ is not unwarranted.

Amber Beckley, a 33-year-old mother from Sandusky county, Ohio, suffers from a rare autoimmune condition called common variable immunodeficiency (CVID). The condition makes her bone marrow unable to produce the antibodies that fight against infections. As a result, she’s terrified of contracting the coronavirus, since she’s a high-risk patient.

“My immune system is at five percent,” said Beckley. “If I caught it, even with treatment from doctors and hospital and ICU, me fighting it off is just not going to happen.” 

Amber Beckley, a 33-year old mother, suffers from CVID, leaving her at-risk for death if she contracts the coronavirus.

Beckley also added that the only way to treat her condition is to get an infusion of antibodies from healthy patients, a treatment she’s been receiving for the last seven years. Unfortunately, her nurse has advised her against leaving the house, to reduce her risk of being exposed to COVID-19 – as a result, she can’t get the life-saving treatment she needs. She also thinks that healthy patients aren’t taking the disease seriously enough.

That’s a position with which Angela Michelle of San Antonio, Texas agrees. Michelle suffers from an autoimmune disease as well – antiphospholipid syndrome (APS), which causes clotting in her arteries and veins. The condition has caused her to have a stroke, and also affects her lung function by causing her to develop pulmonary hypertension. Having a lung disease puts her at an even greater risk if she were to catch the coronavirus, since the virus is respiratory in nature.

“I think it’s been really disheartening for us to see the general public not take it as seriously as we feel like it should be because they don’t think it’s going to affect them. And for us, it does affect us,” she said.

Angela Michelle of San Antonio, Texas, is an antiphospholipid syndrome patient who feels the public isn’t taking the coronavirus as seriously as they should.

Michelle had a medical procedure planned in San Diego, California, but since her flight was cancelled, she’s no longer able to have the procedure done. What really worries her is that medical facilities may become so overwhelmed dealing with the outbreak, that they won’t be able to effectively treat her should she get infected.

Heather Millen, a 42-year-old from Brooklyn, New York, has multiple sclerosis (MS), an autoimmune condition that damages the myelin sheath coating one’s nerves in the brain and spinal cord. She feels that she and others with compromised immune systems have been brushed off by media and politicians alike.

“I feel like people with MS and other people who are high risk are constantly being dismissed,” she lamented. “I feel like the coronavirus is being so underplayed.”

Heather Millen (R) pictured here with her sister (L), an autoimmune disease patient who passed away from H1N1 in 2009.

Millen’s own sister, Denise, also suffered from an autoimmune disease, but passed away when she contracted the H1N1 virus (also known as the ‘swine flu’) back in 2009. Seeing the global health crisis now brings back terrible memories of watching her sister’s body shut down.

“Any time people with MS get any kind of infection, it can be a trigger for their symptoms and make them worse,” said Amesh Amalja, MD and infectious disease expert at the John Hopkins Center for Health Security. “Many are on immune-suppressing medications…So if they do get infected, it could be severe.”

Dr. Murray Cohen, an epidemiologist, adds that it’s important to assess your personal risk for the disease, especially since even mild cases of the disease could lead to pneumonia.

“When we have pulmonary disease, coronary disease, autoimmune diseases — we’ve got no way to fight this virus since there is no treatment,” Dr. Cohen explained. “The only defense you have if you get infected is your immune system fighting that virus. One of you is going to win, and one of you is going to lose.”

That’s why it’s extremely important that even if you’re not high-risk for succumbing to the coronavirus, that you take precautions to help prevent the spread of the virus to those who are immunocompromised. Ultimately, ‘being seen’ is what autoimmune disease patients like Millen want.

“Those people that are being discounted by every news program and government official, they’re people. What about those people?” she countered.

Thank you for reading! If you’re an autoimmune disease patient, what precautions are you taking against the spread of COVID-19? Let us know in the comments below!

Women and Autoimmune Disease: Combating Gender Bias in Medical Treatment

A female jogger runs outside to exercise good health for autoimmune disease

Happy International Women’s Day! In honor of this day, I wanted to share a blog post specifically about women and autoimmune disease.

Women Suffer from Autoimmunity More than Men

According to the American Autoimmune and Related Diseases Association (AARDA) almost all autoimmune diseases are more prevalent in women than in men. For example, with the autoimmune condition systemic lupus erythmatosus (SLE), 9 out of 10 patients are women. Why is this, and what unique challenges does being a women present in the diagnosis and treatment of autoimmune disease?

Women Are More Vulnerable to Autoimmune Disease

According to a groundbreaking study from the University of Gothenberg, due to hormonal influences, women are more vulnerable to autoimmune diseases than men. The study found that the male sex hormone testosterone provides protection against autoimmune disease. Since men have ten times more testosterone than women, they have more protection from rogue immune cells than women.

The study explains that testosterone provides protection against autoimmune disease by reducing the quantity of B cells in the body. B cells are a type of lymphocyte (immune cell) that releases harmful antibodies. Testosterone provides protection against B cells by suppressing BAFF, a protein that makes B cells more viable. When testosterone is eliminated, the result is more BAFF, and thereby more surviving B cells in the spleen.

This is why testosterone is critical to the prevention of autoimmune disease, and why women are more vulnerable to autoimmunity due to having less of this hormone.

Challenges Women Face in Diagnosis and Treatment of Autoimmune Disease

Women face an uphill battle when it comes to the diagnosis and treatment of autoimmune disease. According to Penney Cowan, Chief Executive of the American Chronic Pain Association, physicians tend to dismiss women’s pain more than they do men’s. Women are often told that the pain is ‘all in their head’, or, in the case of gender-specific conditions, such as endometriosis, that the pain is just a ‘normal part’ of being a woman. Other research has found that physicians are more likely to attribute women’s pain to psychosocial causes, like stress or family issues, while attributing men’s pain to an underlying physical problem. Medical professionals also order more lab tests for male patients presenting similar symptoms as compared to female patients.

Diane Talbert, an African-American woman from Virginia, spoke to over 10 physicians for over a decade about the pain she suffers from psoriasis, an autoimmune condition of the skin, that she’s had since childhood. However, her complaints were dismissed as psychological or attributed to menopause. It wasn’t until she was in so much pain that she could no longer lift her arms above her head, that a Rheumatologist diagnosed her with Psoriatic Arthritis, a painful autoimmune disease that affects about 15% of patients with Psoriasis.

A Harvard Medical Review piece titled Women in Pain: Disparities in Experience and Treatment further explored the frustrations women experience when trying to get a diagnosis and treatment. The author cites evidence that while 70% of chronic pain sufferers are women, 80% of all pain studies are conducted on male mice or men! Since women also experience different symptoms than men, such as in the case of heart attacks, physicians are also less likely to recognize the condition in women, and may prematurely discharge a woman who has just suffered a heart attack, since she’s not presenting the symptoms a man normally would.

The author also points out that because autoimmune diseases like multiple sclerosis, rheumatoid arthritis and other connective tissue conditions are chronic in nature, they’re not likely to just ‘go away’ on their own, and require active treatment to prevent further damage to one’s tissues. That’s why, if a woman doesn’t get a diagnosis due to gender bias, the consequences could be dire to her health.

Combating Gender Bias in Medical Treatment

So, what can we as women do in order to combat gender bias that medical professionals have against us? As I discuss in the blog post When Your Doctor Doesn’t Believe You, the key to ensuring you get the medical treatment you need is to stand up for yourself and be as assertive as possible. Another tip that I’ve found over the years is to bring someone else with you to your appointments that can be your advocate – someone who can attest to the fact that you’re no longer able to do the things you used to due to your medical issues. While it’s unfortunate that we as women have to rely on others to advocate for us, sometimes this is the anecdotal ‘evidence’ that a physician needs to hear in order to take our plight seriously. If your doctor still doesn’t budge, then find a new provider who will actually help you get the treatment you need and deserve.

Do you believe that you’ve experienced a medical bias when getting a diagnosis or treatment for your autoimmune condition? Please share your experience by commenting below!

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How One Woman Lives Her Best Life Battling Two Autoimmune Diseases

Lisa Diven, a lifelong athlete, has battled two aggressive autoimmune diseases

Lisa Diven was a 23-year old athlete and recent university graduate when she first began what would become a long battle against chronic illness. Armed with a degree in mechanical engineering, she was ready to take on the world. Her health, however, had other plans.

Lisa was running 10 miles a day in preparation for a marathon race when she began to experience pain in her foot. Thinking that it was just a stress fracture, she avoided seeing a doctor until the pain worsened. When she finally did see her physician, he also thought it was just a stress fracture. Six months later, however, the pain had gotten even worse, and Lisa was forced to see a Rheumatologist, who diagnosed her with Rheumatoid Arthritis (RA), an autoimmune disease causing painful inflammation in one’s joints.

Although Lisa was relieved to put a name to her pain, she encountered another uphill battle. As a result of step therapy, her medical insurance required her to use less expensive treatments to prove they didn’t work until she could take the more expensive biologic medications that her doctor recommended. Consequently, Lisa was forced to take medications for six months, during which time her symptoms worsened and she experienced irreversible joint damage. Once Lisa finally started taking the biologics, her symptoms began to improve.

For the next 10 years of her life, rheumatoid arthritis continued to ravage Lisa’s every joint. Though she was able to control the disease with treatment, pain was still a major aspect of her life.

Eventually, Lisa and her husband decided to start a family. Due to the high-risk nature of the pregnancy, Lisa went to a high-risk obstetrics practice. Though she got through the pregnancy okay, she experienced a massive flare three months post delivery, and the medications that she had used with success previously no longer worked. She lost her appetite and lost weight, and she experienced migraines, vertigo, anxiety and depression. Lisa was forced to go on an extended medical leave, and later left her job completely. After seeing various specialists, Lisa was diagnosed with systemic lupus erythematosus (SLE), another autoimmune disease that causes widespread damage to the body’s vital organs, skin and joints.

Lisa is now being actively treated for lupus, all while controlling her existing RA symptoms. She is happy to report that she finally feels like she is returning to being ‘herself’ again. One of the things that helped Lisa the most was connecting with other patients through the Arthritis Foundation, through which she later started a local support group to help others living with the disease. These days, Lisa feels healthy more often than sick, and given her tumultuous health history, that’s a win she’ll take.

To read more about Lisa’s battle with autoimmune disease, visit healthywomen.org.

8-Year-Old Who Died from Autoimmune Diseases Leaves Legacy List of Rules

Ellie Pruitt was an 8-year-old girl who left a legacy of wisdom after passing from autoimmune diseases

Ellie Pruitt was an 8-year-old girl from Canton, Georgia, who passed away from various autoimmune diseases.

When Ellie was just three years old, she began to complain of pains in her legs and fatigue. Ellie’s parents took her to a Pediatric Rheumatologist who confirmed that she had juvenile rheumatoid arthritis, an autoimmune condition causing painful inflammation in the joints. She took steroids and received injections of methotrexate, a disease-modifying anti-rheumatic drug designed to reduce the inflammation.

During Ellie’s short lifetime, she participated in medical studies to determine what causes autoimmune disease. Both of her parents, Heather and Chuck Pruitt, have autoimmune conditions themselves; Heather was diagnosed with type 1 diabetes when she was a college senior, and Chuck was diagnosed with lupus at age 15.

In addition to the medical studies, Ellie and her family participated in the Walk to Cure Arthritis. They formed a team of families representing four children with the condition, called the Woodstock Warriors Against Juvenile Arthritis. Their team raised more than $5,000 for the cause.

Ellie participated in the Walk to Cure Arthritis with her family

After Ellie passed away on February 6th, her parents found a list of ‘rules to live by‘ that she had written. The rules were: 1) Have fun 2) No fighting 3) No pushing, shoving or hitting, and 4) Always love. After her parents found the list of rules, they decided to share it with her classmates to help comfort them after her passing.

Ellie Pruitt’s list of rules to live by

“It’s amazing that an 8-year-old little girl knew what we should focus on,” her mother Heather Pruitt said. “She started [rule] number 5, but erased it, because she knew that’s the greatest…If you can do all those things, you’re going to be in good shape.”

As a tribute to young Ellie’s wisdom, her hometown decided to display her list of rules in various places around their community. Local businesses like Bruster’s and Chick-fil-A displayed rules 1 and 4 on signage outside their stores.

Chick-fil-A displays a sign with two of Ellie’s rules on it

According to Ellie’s obituary, she was very artistic and loved to do crafts, draw, and paint. She was also a dancer and a musician (she played the piano). Her favorite places were school, church and the beach.

If you enjoyed reading about Ellie’s story, please don’t forget to like, share and comment below! Also, subscribe for more autoimmune disease news.

Mattel Releases Diverse Barbie Collection, Featuring Dolls with Autoimmune Diseases and Disabilities

The New Line Features Dolls with Vitiligo, No Hair and Prosthetic Limb

Toymaker Mattel is drawing headlines with its latest Barbie collection, featuring a new line up of dolls with autoimmune diseases and disabilities, as well as a more diverse depiction of beauty.

The lineup includes a doll with vitiligo, an autoimmune condition in which the body attacks and destroys the cells that produce melanin, a pigment that give the skin color. This results in white patches or irregular shapes on the skin that can grow and spread.

Stella Pavlides, President and Chief Executive of the American Vitiligo Research Foundation in Clearwater, Florida, applauds the move by Mattel to showcase dolls with the condition. She says that children living with vitiligo could benefit from a doll that looks like them, especially when it comes to dealing with the social stigma of the disease. Pavlides, who has vitiligo herself, recalls that the social stigma of growing up with the condition was so severe, that store clerks would refuse to take money from her hand.

The lineup of Barbie dolls also features another model with no hair, which could be appealing to young girls who suffer from alopecia, an autoimmune disease in which the body attacks and destroys hair follicles. Conversely, the line also includes a male Ken doll with long, luscious locks, rather than the traditional preppy crew cut.

The South China Morning Post reports that the move by Mattel represents a broader move by society to be more accepting of diverse representations of beauty. For example, Canadian model Winnie Harlow is famous for becoming the first supermodel with vitiligo, and Congresswoman Ayanna Pressley recently revealed her battle with alopecia.

Mattel’s new collection of barbies also includes a doll with a golden prosthetic limb, demonstrating that beauty comes in all forms, and includes those with disabilities, too. In 2019, the company had released a doll in a wheelchair as well.

Mattel reports that over half of their dolls sold by the company came from a diverse set of backgrounds. In fact, a spokesperson for the company stated that their top selling doll was an African-American Barbie with an Afro.

What do you think of Mattel’s move to showcase more diversity in their dolls, particularly those showing chronic illnesses and disabilities? Leave your thoughts in the comments below!

Teen with Autoimmune Disease Backing Bill to Allow Medical Marijuana in Schools

A teenage boy looks at Bill 331 and smiles alongside a government leader
Connor Scheffield, an autoimmune disease patient, is supporting a bill that would allow medical marijuana in Maryland schools

Connor Scheffield, a teen from Annapolis, Maryland, is backing a bill that would allow medical marijuana to be taken at a nurse’s office in Maryland schools. Currently, medical marijuana is banned from school campuses across the state.

Connor says that if it weren’t for medical marijuana, he wouldn’t be able to get through the school day. This is because the teen suffers from a rare autoimmune disease called Gastro-Intestinal Dysmotility.

GI Dysmotility is a painful condition that causes patients to not be able to digest food and nutrients properly and process waste. Dysmotility refers to the abnormal movement of food, nutrients and waste through the GI tract. When the body’s immune system attacks the nerves in the GI tract, transit through the GI tract becomes impaired. Symptoms of the condition include nausea, bloating, vomiting, diarrhea, constipation, abdominal pains, early satiety, and involuntary weight loss. Neurological symptoms may also accompany the disease.

According to Lawrence Szarka, MD, from the Division of Gastroenterology and Hepatology at the Mayo Clinic in Rochester, Minnesota, GI Dysmotility can be disabling. “Patients who have [GI Dysmotility] are miserable,” commented Dr. Szarka. “They have no appetite. They have terrible abdominal pains and constipation. Often these patients undergo lots of diagnostic testing and multiple consultations.”

Like many autoimmune diseases, because GI Dysmotility involves the immune system, nervous system, and digestive system, patients must consult with a team of physicians spanning multiple specialty areas. Furthermore, treatment options are extremely limited, and tend to focus on treating the symptoms, like facilitating gastric emptying, rather than treating the disease itself. And while immunotherapies do exist, some patients who test positive for antibodies don’t always respond to the medication.

Young boy is hospitalized for GI Dysmotility, a disabling autoimmune disease
Connor receives treatment for GI Dysmotility, a rare autoimmune disease

Connor was one of those patients. His father, Michael Scheffield, says that his son tried everything before turning to medical marijuana to find solace, and that it’s the only treatment that’s worked so far. Connor takes it in the form of an oil tincture; he puts just a few drops on his tongue and takes it with a swig a water. “I need it every few hours,” said Connor. “It’s the difference between life and death.”

A young boy in the hospital hooked up to fluids as he undergoes treatment for GI Dysmotility
Connor Scheffield was confined to hospital beds as a child before finding solace in medical marijuana

Prior to using medical marijuana, Connor was confined to hospital beds. Since it’s currently illegal to use the substance at schools in Maryland, he must leave his school every few hours in order to take a dose. It’s also illegal for underage individuals to take medical marijuana without the presence of an adult, so when his parents are out of town, Connor has to go without. On those days, the teen says he can hardly get through a school day. “You can take opioids, you know, painkillers in a nurse’s office,” commented Connor. “But I can’t take my cannabis.”

House Bill 331, dubbed ‘Connor’s Courage’ would allow medical marijuana to be used in a nurse’s office in Maryland schools. Connor is currently one of 200 children who are certified to use medical marijuana in Maryland, and who could stand to benefit from this bill.

To learn more about Connor’s story and his experience with GI Dysmotility, please visit the CBS Baltimore website.

Could the secret to chronic pain relief lie in the memories stored in your body and mind?

A woman undergoes EMDR therapy by a licensed practitioner.

It is clear that stress can have a direct impact on autoimmune, chronic pain and other health conditions. Autoimmune Warrior shares research on the role of chronic stress in autoimmune disorders in this blog post. However, the nuances regarding the types of stress and how to deal with them are not often something we talk about with a medical physician, or to anyone in general.

The body and mind are inherently connected and emotional stressors can and do impact our physical functioning. Beyond everyday stressors, traumatic events, whether they occurred long, long ago in your early childhood, or something you experienced this year can get stored in your body and can manifest in the form of stomachaches, back and joint pain, or chronic migraines, to name a few. Everyday stressors may refer to issues with setting boundaries with a family member, difficulty speaking up for your needs, or putting your needs last ahead of everyone else.

The effects of emotional stress and trauma on the body’s hormonal functioning and immune system are well researched. Dr. Gabor Mate, a Hungarian physician who has investigated for many years the potential psychological attributes to his patients’ physical illnesses, including breast cancer, ALS and intestinal issues, has found commonalities in his patients dealing with similar health issues. He found links between those who experienced childhood abuse, neglect and/or maintaining unhelpful relational roles and those who had chronic health issues. These connections are described in his book, When the Body Says No.

Stress and trauma impact hormone functioning. Specifically, research has found that cortisol, a critical hormone implicated in managing stress responses, is impacted by traumatic experiences. For example, decreased cortisol levels have been found in women who have a history of childhood sexual abuse and Post Traumatic Stress Disorder (PTSD). This change in cortisol level functioning can impact the immune system (Kloet et al., 2006), as healthy levels of cortisol help to regulate inflammatory response and glucose levels. When too much cortisol is released from the body, it constantly feels as if it is in fight or flight mode (whether it’s a real or perceived threat), which can inhibit the regulation of glucose levels and responses to attacks on the immune system. Click here for more information.

Furthermore, the ACEs (Adverse Childhood Experiences) study conducted by Kaiser, found that the more adverse childhood events you have had, the higher at risk you may be for certain health conditions such as heart disease, breast cancer and diabetes. For more information on ACEs, read Autoimmune Warrior’s blog post. Additionally, click here to find out what your ACE score is.

So what does this all mean? It means that help in the form of psychological healing may positively impact your physical health and decrease the chronic pain. Addressing long-avoided emotional pain from past trauma can (and does!) help. If you are thinking to yourself “I didn’t experience trauma!” but you wonder why those boundaries are so hard to set, you feel guilty if you don’t take care of your parents’ emotional or physical needs, or you’re avoiding social situations (just a few examples), chances are there’s something from your past that may be keeping you from living an emotionally and physically healthier life today. There are many options for helping you in this area, particularly forms of body-based psychotherapy models that can be effective with chronic pain, including EMDR therapy.

EMDR (Eye Movement Desensitization Reprocessing) therapy uses bilateral stimulation in the form of eye movements or alternative tapping to activate memory networks which are linked to maladaptive functioning; in other words, it activates the traumatic memories that are linked to negative feelings and beliefs that we have about ourselves now (for example, having low self-esteem, triggers to not feeling safe when you know logically that you are). During a REM sleep cycle your eyes move back and forth as you process the day’s events. In the same way, bringing up those past memories with eye movements in a safe, controlled environment with a skilled EMDR therapist helps the brain process through the memory and come to a more adaptive resolution. It allows the brain the space and time to do what it couldn’t do at the time that event occurred—process. And that can help remove self-blame or other negative beliefs, and in turn, relieves symptoms of anxiety, depression and PTSD, to name a few. With the relief of mental health symptoms, there is less stress on your immune system and this can improve overall pain symptoms and your energy level. To learn more about EMDR therapy, visit www.EMDRIA.org.

As Bessel van der Kolk suggests, The Body Keeps the Score, so let’s not forget to consider what has happened (or is happening!) in your life which may be contributing to your autoimmune symptoms.

Brooke Bender is a licensed Marriage and Family Therapist and Board Certified Art Therapist, as well as an EMDR certified therapist practicing near Los Angeles, California. For more about Brooke, please visit: www.brookebender.com

Christina Anstead Reveals Her Struggle with Autoimmune Disease

Christina Anstead, 36, Reveals Struggle with Autoimmune Diseases

Reality TV star Christina Anstead from the hit HDTV show Christina on the Coast revealed she suffers from autoimmune diseases this past week.

In a candid Instagram video featuring her 4-month-old son Hudson, Anstead wrote, “With having autoimmune issues and a new baby, I need all the help I can get. Supplements are key for me to feeling my best. I take a ton of supplements and [NatureWise] is my go-to brand.” 

In the comments, a fan asked for details on which autoimmune issues she had. Anstead replied that she suffers from Hashimoto’s Thyroiditis and Polycystic Ovarian Syndrome (PCOS). She also said she has Eczema, which flares up when she consumes certain foods.

Hashimoto’s Thyroiditis is an autoimmune condition in which the body’s immune system mistakenly attacks the thyroid gland. This, in turn, leads to hypothyroidism, in which the thyroid gland underproduces important hormones necessary for metabolism and other bodily functions. Common symptoms include fatigue, weight gain, constipation, heavy menstrual periods and feeling cold all the time.

PCOS is a condition that involves the recurrence of cysts on a woman’s ovaries. While PCOS is not yet proven to be autoimmune, a 2016 publication theorized that it is an autoimmune disease; the theory states that the condition starts when low levels of progesterone cause the body to over-produce estrogen, which results in the production of auto-antibodies.

Eczema is an inflammatory skin condition that results in painful, itchy rashes and redness of the skin. It is often triggered by external factors, such as certain foods, smoke, pollen, or other irritants.

Having experienced both painful ovarian cysts and irritating eczema myself, I can relate to Anstead’s struggle a lot. However, with the right treatment and proactive care, the symptoms can be manageable. And, the fact that Anstead has accomplished so much as a successful real estate investor, reality TV star, and mom of five, while managing multiple chronic illnesses, makes her success all the more impressive.

Top Autoimmune Disease Books to Read in 2020

Have you read any good books lately about autoimmune disease? I am continuously consuming autoimmune-related content, whether it’s blogs, YouTube videos or full-fledged novels. Read on to learn about my favorite autoimmune disease books that you should poke your nose into in 2020!

1. The Autoimmune Epidemic

The Autoimmune Epidemic by journalist Donna Jackson Nakazawa is a thought-provoking read about the potential causes behind many autoimmune conditions. In her book, Jackson Nakazawa theorizes that environmental factors such as pollution, pesticides and other toxins are responsible for the alarming rise in autoimmune diseases over the course of the last few decades. Although not a medical professional or scientist herself, Jackson Nakazawa provides compelling evidence that had me wondering what really triggered my own autoimmune conditions. The author herself has an autoimmune disease called myasthenia gravis that severely affected her mobility. Her book has received praise from numerous acclaimed individuals, including U.S. Senator and Secretary of State John Kerry.

2. An Epidemic of Absence

An Epidemic of Absence by Moises Velasquez-Manoff is another exploratory book about the causes behind autoimmune disease. His main theory is that autoimmune conditions, as well as allergies, are caused by a lack of actual communicable diseases in modern society. In ancient times, our ancestors had to contend with parasites and infectious diseases, like hepatitis A, measles, mumps and tuberculosis, from which they could easily die. However, our modern ‘too-clean’ environment has lead to our immune system attacking a new target – our own bodies – instead. I found that Velasquez-Manoff’s book was a direct contrast to The Autoimmune Epidemic (referenced above), since it posits that autoimmune diseases are caused by an absence of environmental triggers, rather than their presence. The author himself has alopecia universalis, an autoimmune disease that results in total body hair loss.

3. The Wahls Protocol: A Radical New Way to Treat All Chronic Autoimmune Conditions Using Paleo Principals

The Wahls Protocol by Dr. Terry Wahls is an excellent read. I first heard about Dr. Wahls when I watched her viral TedTalk video, Minding Your Mitochondria, in which she describes the relationship between the body’s gut microbiome and the development of autoimmune disease. In her book, Dr. Wahls, who has multiple sclerosis (MS), details how she went from being wheelchair-bound to competing in a marathon after adopting the principals of her dietary protocol. Before implementing the protocol, her MS continued to worsen, despite receiving excellent treatment from some of the top neurologists in the country. Dr. Wahls also stresses the importance of vitamin D naturally derived from the sun in order to maintain a healthy immune system. Although Dr. Wahls’ advice isn’t 100% proven, her medical background and own track record of success healing herself and others is certainly persuasive.

4. The Autoimmune Wellness Handbook

The Autoimmune Wellness Handbook is the first of several novels penned by Mickey Trescott and co-author Angie Alt. The focus of the book is about the Autoimmune Protocol (AIP), a dietary regimen that involves eating paleo, avoiding gluten and dairy, as well as numerous other foods that could ‘trigger’ an autoimmune reaction. I first read the book when I borrowed it from my local library; I had to wait to read the book though, since it was immensely popular, and I was number 25 on the waiting list! Since then, a family member gifted me with a follow-up book by Trescott, called The Nutrient-Dense Kitchen. The book is chock-full of great recipes that are AIP-friendly. Something I like about Trescott’s books is that they not only provide easy to follow recipes, but actually explain why it is that eating this way can help alleviate autoimmune symptoms for some people, including a deep dive into the science behind leaky gut. Trescott herself has both Celiac disease and Hashimoto’s Thyroiditis.

5. The New Sjogren’s Syndrome Handbook

The New Sjogren’s Syndrome Handbook was written by the Sjogren’s Syndrome Foundation (SSF) and edited by a physician familiar with the disease. What I like about this book is that it’s specific to Sjogren’s Syndrome (SJS), which is an autoimmune condition that I have. The book goes into the fundamentals about SJS, including what the disease is, how it is diagnosed, the main symptoms, complications, and treatment options. The one critique I would have for the book is that although it’s called the ‘New’ Sjogren’s Syndrome Handbook, the book was originally written in the 1990’s, so it’s not really new (though the foundation has come out with revised editions since). Overall, I think it’s a great read for a newly-diagnosed patient with Sjogren’s, or a family member/friend of someone with Sjogren’s, so that they can understand more about the disease.

Those are my top 5 autoimmune disease related books! Do you have any favorite novels related to chronic illness, autoimmune disease, or other health-related topics? If so, please share in the comments below!

10 Facts about Rheumatoid Arthritis (RA)

According to the Mayo Clinic, Rheumatoid Arthritis (RA) is an autoimmune disease that occurs when one’s body attacks the synovium (the lining of the membranes surrounding one’s joints). Read on to learn 10 interesting facts about this chronic autoimmune condition.

1. Joint pain is a hallmark of the disease

The John Hopkins Arthritis Center states that pain and swelling of the small joints—such as those in the hands and feet—is a hallmark symptom of the disease. However, any joint in the body can be affected by RA. Other than pain and swelling, the inflammation caused by RA can lead to stiffness, deformity, and even loss of function. Joint damage occurs in 80% to 85% of affected patients, with the majority of the damage occurring in the first two years of developing the disease.

2. RA doesn’t just affect the joints

Although joint pain is the most common symptom, RA affects more that just one’s joints. Other manifestations of the disease include eye inflammation, a low white blood cell count, subcutaneous nodules (skin lesions), fatigue and lung disease. What’s more, RA is known to be associated with a higher risk of lymphoma (a type of cancer), anemia (low iron levels), osteoporosis, and depression.

3. It puts patients at risk for death

Left untreated, RA increases one’s risk of mortality. The John Hopkins Arthritis Center states that untreated individuals with RA are twice as likely to die compared to unaffected individuals of the same age. Furthermore, RA can reduce life expectancy by 10 to 15 years.

4. It’s more common than you think

RA is in fact the most common type of autoimmune arthritis, affecting more than 1.3 million Americans. Approximately 75% of all RA patients are women, and 1-3% of the American female population is predicted to develop the disease over the course of their lifetime.

5. People of all ages can be affected

A common misconception of RA is that it’s an ‘old person disease’. Not true. The onset of the disease most commonly occurs in those ages 30 to 50; however, anyone of any age can develop the condition. Furthermore, juvenile rheumatoid arthritis, which occurs in those ages 16 and under, currently affects 50,000 children and youth in the U.S. alone.

6. There are other types of arthritis too

RA is mistakenly believed to only affect senior citizens, since it is often confused with osteoarthritis, which occurs when the protective cartilage that cushions the ends of your bones wears down over time. Other types of arthritis include psoriatic arthritis, ankylosing spondylitis, and gout. To learn more about each of these different types of arthritis, visit the John Hopkins Arthritis Center’s website.

7. There are multiple risk factors

Although the exact cause of RA is unknown, scientists believe that a combination of genetic and environmental factors may put individuals at a greater risk of developing the disease. Beyond being female and middle-aged, other risk factors include: having a family history of the disease, smoking, exposure to substances like asbestos or silica, and obesity.

8. There are a variety of treatment options

Rheumatologists often prescribe non-steroidal anti-inflammatory drugs (NSAIDs) to reduce the inflammation and pain associated with RA. Other prescription medications that treat RA include corticosteroids, disease-modifying antirheumatic drugs (DMARDs), and biologic response modifiers. Non-pharmaceutical treatment options include physical therapy, chiropractor treatment, and in some cases, surgery. To read more about these treatment options, visit the RA Support Network website.

9. The prognosis of the disease varies

Some patients with RA report only mild symptoms that place few limitations on their everyday lives. However, other patients experience significant pain and impact on their lives, including their ability to work. One of the main factors that predicts the disease prognosis is early detection. The earlier RA is identified, the sooner it can be effectively treated and joint inflammation and damage can be reduced.

10. There is hope

If you or a loved one has been diagnosed with rheumatoid arthritis, check out the American College of Rheumatology’s patient education videos to learn more about the condition. Additional patient and caregiver resources can be found on their website, including fact sheets, case studies and current news.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share, and comment below!

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Practicing Gratitude When You Have a Chronic Illness

Gratitude doesn’t change what we have in front of us; it changes the way we see what we have

Anonymous

This past Thursday was Thanksgiving here in the United States. I spent the day with my husband’s family and I couldn’t be more grateful to have them close by when I’m far away from my own family.

This got me thinking about practicing gratitude in general. How often do we really give thanks for what we have? Only once a year, when Thanksgiving rolls around? Or are we only thankful for what we have when we’ve lost it (in other words, when it’s too late)?

When you have an autoimmune disease or any other type of chronic illness, it can be challenging to feel grateful for what you have. I mean, how could I feel thankful for having near-constant joint pain, fatigue, widespread dryness, skin issues and brain fog, among other symptoms of Sjogren’s Syndrome and Hidradenitis Suppurativa (HS)?

But, if I challenge myself to think harder, I can actually think of many ways in which I should be grateful for what I have. Many people, especially those who are less fortunate or who live in developing countries, don’t have access to a reliable healthcare system, including adequate treatment options, necessary medications, and educated health care professionals. Even here in the United States, many people with chronic illness struggle to afford their medications, health insurance or co-pays for doctor’s visits. While I am by no means rich, I’m thankful that I have the ability to take care of my healthcare needs when many people cannot.

Another thing that I’m grateful for is the amazing chronic illness community that I’ve connected with in the past two years of blogging on this site. Having a chronic illness can sometimes be lonely, and you may feel like no one understands what you’re going through (especially if none of your family or friends have a disease themselves, or if you don’t have a satisfactory support system). However, by connecting with others on WordPress, Instagram and Reddit who are in a similar situation, I’ve quickly realized that I’m far from being alone, and I’ve learned new methods of self-care that have helped me manage my illness.

Thanks for reading this blog post! If you’re an Autoimmune Warrior, what are you thankful for (that you may have forgotten to be grateful about)? Comment below and let me know!

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Toddler’s Strep Throat Triggers Neurological Autoimmune Disease

Nate Kenoe, pictured above, developed a frightening autoimmune disease after strep throat

Nate Kenoe was a vibrant, energetic 4-year-old boy. Unfortunately, he had had a string of illnesses, testing positive for strep throat five times over the course of eight months. Each time, it wasn’t immediately clear that Nate had strep throat- oftentimes, he didn’t even have a sore throat! Instead, he presented with less common symptoms, such as bad breath or a sore on his butt. When he would finally get diagnosed with strep throat, he had to take a less effective antibiotic treatment, due to his allergy to penicillin.

Eventually, Nate developed even more disturbing symptoms that weren’t in line with strep throat. He began to have sensory issues, feeling pains in his feet as if he were walking on rocks, experiencing coldness in his shoulders, and other tics. He also had dramatically changed behavior, including vomiting at the sight of food, urinating multiple times an hour and banging his head.

Thankfully, an attentive pediatrician recognized Nate’s symptoms as pediatric autoimmune neuropsychiatric disorder associated with streptococcal infection, known as PANDAS for short. PANDAS is a little-known autoimmune disease primarily occurring in children between the ages of 3 and 12. With this disease, strep throat opens the blood-brain barrier, allowing abnormal immune cells to enter the brain and cause neuro inflammation. It has been compared to autoimmune encephalitis (AE), another autoimmune neuropsychiatric disorder.

The PANDAS network estimates that 1 in 200 children could have PANDAS; however, this autoimmune condition is often under-diagnosed or misdiagnosed due to its similarity with other conditions such as Tourette’s syndrome and Obsessive-Compulsive Disorder (OCD). Nate’s own mother, a pediatric nurse, hadn’t even heard of the condition before.

Nate received antibiotics, anti-inflammatory medications and had a surgery to remove his tonsils as a treatment for his PANDAS. As her son received treatment, his mother learned that PANDAS is in fact a controversial disease. Many physicians are skeptical that this autoimmune disease even exists, while others believe that there needs to be a standardized method for diagnosis and treatment.

One year later, Nate is faring much better than last year. However, if he gets sick, such as with a cold or virus, it will trigger another autoimmune ‘flare’ resulting in more sensory issues. Ultimately, Nate’s family hopes that by sharing his story, they can raise awareness about PANDAS, and in turn, help the disease get more research funding.

To learn more about PANDAS and Nate’s story, click here.

Endometriosis linked to common autoimmune diseases

Endometriosis image courtesy of: The Endometriosis Foundation of America

A group of Italian researchers based out of Sapienza University in Rome have discovered a link between endometriosis and several common autoimmune diseases.

According to the Endometriosis Foundation of America, endometriosis is a menstruation-related disease that primarily affects women in their reproductive years. The disease occurs when tissue similar to the endometrium (the lining of the uterus) migrates outside of the womb, where it shouldn’t be. This results in a variety of symptoms, including inflammation, severe cramping and pain, long, heavy periods, and infertility. It can also cause other symptoms, such as nausea, vomiting, bowel and urinary disorders, chronic fatigue and pain during sexual activity.

The exact cause of endometriosis is poorly understood. While many theories have been suggested, this study investigated the prevalence of common autoimmune diseases among Italian women with endometriosis. The study compared 148 women with endometriosis (the case group) to 150 who did not have the condition (the control group). The women in the study ranged from 18-45 years of age, and those who had endometriosis suffered from varying degrees of the disease.

The study found that in the case group, there was a ‘significantly higher’ prevalence of autoimmune diseases such as systemic lupus erythematosus (SLE), celiac disease, and Hashimoto’s thyroiditis, as compared to the control group not affected by endometriosis. Inflammatory Bowel Disease (IBD), however, was not found to be linked with endometriosis.

The main limitation of this study is the small sample size. Further studies must be done with a larger group in order to prove that autoimmune activity is responsible for the development of endometriosis. However, this study is helpful for physicians to consider the possibility of autoimmune conditions that may be co-occurring in patients with endometriosis.

To learn more about endometriosis, visit the Endometriosis Foundation of America website.

This blog post is dedicated to Jenni Rempel, a classmate of mine who passed away from endometriosis four years ago. Before she passed away, Jenni produced this video to educate others about this painful disease: Help Me Get My Life Back from Endometriosis.

How Chronic Illness Can Kill Your Self-Esteem

Chronic Illness and Self-Esteem

I recently read a post on Reddit on the r/autoimmunity subreddit titled ‘Losing Everything‘. In the post, the author describes being diagnosed with Sjogren’s Syndrome, an autoimmune condition affecting one’s moisture-producing glands. The author has also been living with other autoimmune diseases, including Graves’ disease, Hashimoto’s Thyroiditis and Granulomatosis with Polyangiitis (GPA), for quite some time.

She goes on to say that since being diagnosed with these conditions, she feels like she is losing everything that makes her ‘herself’. For example, she is an artist, but she has lost the use of her dominant hand as a result of her conditions, leading her to quit her art. She also had a unique style, with beautiful thick hair and piercings. However, most of her hair has now fallen out and she had to remove her piercings due to constant infections.

The author’s post made me think of my own struggle with chronic illness and how having Sjogren’s Syndrome, Hidradenitis Suppurativa (HS) and Benign Fasciculation Syndrome (BFS) has impacted my sense of self.

Although I have both good days and bad days, I often resent my body and these diseases for what they have ‘taken away’ from my life. I often think to myself, what would I have accomplished by now had it not been for this disease? Would I be further along in my career? My education? Would I have more social connections and deeper friendships? It’s hard to quantify, but I feel like my life would have been very different had I not developed autoimmune issues. In other words, I don’t feel like I can be my true ambitious self because of my chronic illnesses.

I could also relate to the author’s mention of her outward appearance, like her hair and piercings. I notice that I often think ‘why bother?’ when it comes to things like fashion and beauty, which were important to me before my diagnosis. I think this is because I’ve adopted the mindset that I am ‘diseased’, so why bother to look nice? This is definitely a negative mindset that I’m continuing to work on, but, I think it’s important to acknowledge how chronic illness can impact your sense of self- whether it’s your own self-image, or even your outward appearance.

I also recently read a powerful testimony on The Mighty by Megan Klenke titled, ‘How Chronic Illness Can Drastically Affect Your Self-Esteem’. In her post, she describes the shame that many individuals with chronic conditions and disabilities face, such as having to ask for help to do tasks that they once did independently, using a wheelchair, or dealing with embarrassing side effects of medications. Furthermore, Megan also points out that simple things like missing family functions or get-togethers with friends as a result of illness can make one feel left out and like an ‘awful’ family member or friend.

A YouTuber I follow named Samantha Wayne also created a video detailing her struggle with the impact of lupus on her self-image. She ended up being hospitalized and had to take time off to rest. During this time, she says she felt useless and like she wasn’t doing enough. Also, she had to step back from her job because being on her feet all day was taking a toll on her health. The medications she was taking, such as prednisone, also impacted her outward appearance.

Samantha did say that leaning on her support system has helped her to get through negative feelings about her self-worth. She also says that realizing that everyone is worthy, regardless of their health status, has also helped. Furthermore, she says that while her disease caused her to lose certain hobbies, like competitive basketball, she was able to adopt new hobbies and learn new skills such as video blogging on her YouTube channel, which she started in order to raise awareness about lupus. Finally, she says that practicing gratitude for the things she can do and what she has is another way that has helped to overcome her low self-esteem.

Has having a chronic illness impacted your self-confidence, and if so, how have you handled it? Let us know in the comments below!

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Evidence of Autoimmune Response in Patients with Autism; Family of Woman with Scleroderma Seeks Financial Support

Evidence of autoimmune response in patients with autism

Autism impacts 1 in 59 American children by age eight and can seriously impair social skills and communication, and lead to repetitive behaviors and restricted interests. For the first time, a team of Boston, Massachusetts-based physicians and scientists have published a report detailing evidence of an autoimmune response against brain cells in patients with autism.

Matthew Anderson, MD, PhD, was the lead researcher in the study. His team analyzed brain tissues donated through Autism BrainNet, a non-profit tissue bank, and noticed that over two-thirds of the brains examined contained three uncommon characteristics.

Firstly, they noted the accumulation of immune cells surrounding blood vessels in the brain (called perivascular lymphocyte cuffs). Secondly, they found that there were bubbles or blisters (that scientists call blebs) accumulating around these blood vessels. Finally, upon further examination, they found that these blebs contained debris called astrocytes.

These findings are evidence of an autoimmune response and chronic inflammation in the brains of patients with autism. The scientists also compared the autistic brains to those of non-autistic donated tissues, and the presence of these findings in the autistic patients ‘significantly surpassed’ that of the control cases.

Although this study does not definitively prove that autism is an autoimmune disease, it is a first step in finding evidence of an immune response for this neurological condition. Anderson compared his team’s findings to research that multiple sclerosis (MS) is an autoimmune disease caused by the immune system’s destruction of the nerves’ myelin sheath.

To read more about this astonishing study, click here.

Family of woman with scleroderma seeks financial support

Yesenia Garica, 25, of Newhall, Santa Clarita, California, first began experiencing debilitating symptoms five years ago. However, it took years for her to get a diagnosis of scleroderma – an autoimmune condition that primarily affects the skin.

Symptoms of scleroderma include hardened and thickened skin, ulcers and sores on the skin, joint pain, muscle weakness, intolerance to cold, high blood pressure, blood vessel damage, and scarring of the lungs.

Yesenia has been hospitalized six times and had surgery three times this year alone. As a result, she now weighs a mere 74 lbs. Unfortunately, her health insurance does not cover the medication that she is taking to treat her symptoms. As such, her family has set up a GoFundMe campaign so that Yesenia can continue to take the medication and to cover specialized treatment at UCLA. So far, the campaign has raised $4,700 out of the $10,000 goal.

To learn more about Yesenia’s condition and to contribute to her GoFundMe campaign, click here.

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions; Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

Pop Singer Sia Reveals Battle with Autoimmune & Other Chronic Conditions

Pop singer Sia recently revealed in a Tweet that she is battling chronic pain as a result of an autoimmune disease and another genetic condition.

In the Tweet, Sia said, “Hey, I’m suffering with chronic pain, a neurological disease, [and] ehlers danlos and I just wanted to say to those of you suffering from pain, whether physical or emotional, I love you, keep going,” she wrote. “Life is fucking hard. Pain is demoralizing, and you’re not alone.”

Sia suffers from an autoimmune condition called Grave’s disease, which occurs when the body’s immune system attacks the thryoid gland. This results in hyperthyroidism, which is the overproduction of the thyroid hormone. Without treatment, the disease can result in heart problems like irregular heartbeat, blot clots, stroke, and heart failure, as well as eye health issues, like double vision, light sensitivity, eye pain and vision loss. It can even lead to thinning bones and osteoporosis.

In addition to Grave’s, Sia has Ehlers-Danlos Syndrome, a genetic condition and connective tissue disorder that can affect one’s bones, joints, skin and blood vessels.

Sia’s Tweet has garnered over 170,000 ‘likes’ on Twitter and has many fans responding with well-wishes and sharing their own experiences with chronic illness. One fan tweeted, “We love you so much Sia, you’re not alone either, please take care ❤ sending you lots of love and healing vibes.”

Her Tweet also draws similarities to Jameela Jamil’s Instagram message, in which she also revealed that she has Ehlers-Danlos Syndrome and another autoimmune disease called Hashimoto’s Thyroiditis, which causes hypothyroidism (the opposite of Grave’s Disease).

To learn more about Grave’s Disease, visit the American Thyroid Association.

Philippines Leader Rodrigo Duterte Says He Has Autoimmune Disease

The President of the Philippines, 74-year-old Rodrigo Duterte, says he suffers from an incurable autoimmune disease. The condition, called myasthenia gravis (MG), is a neurological disease that causes weakness in the skeletal muscles, according to the National Institute of Neurological Disorders and Stroke. The disease can also affect eyelid movements, facial expressions, talking, chewing and swallowing.

Myasthenia gravis occurs when the body’s own immune system attacks the neurotransmitter receptors on one’s muscles. This prevents the neurotransmitters responsible for muscle contraction from binding to nerve endings, thereby preventing muscle contraction. This results in the widespread muscle weakness that is the hallmark of this disease.

Duterte believes that he inherited the condition from his grandfather, who had myasthenia gravis as well. “One of my eyes is smaller. It roams on its own,” he said, according to a transcript released Sunday by his presidential office.

Although Duterte appears to be in relatively good health, and myasthenia gravis can be managed with treatment, about 20% of the people with the disease will experience a health crisis at some point in their lives.

To learn more about myasthenia gravis, visit the MG Foundation of America website.

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Kim Kardashian West Discusses Painful and Scary Autoimmune Diagnosis; J.K. Rowling Donates Millions to Fund Multiple Sclerosis (MS) Research

Kim Kardashian West gets an ultrasound of her hand, leading to a ‘painful and scary’ diagnosis.

Kim Kardashian West Discusses ‘Painful and Scary’ Autoimmune Diagnosis

Celebrity and business mogul Kim Kardashian West discussed her recent autoimmune diagnosis on an episode of Keeping Up with the Kardashians. During the episode, Kardashian West visits a doctor with symptoms including pain, swelling and stiffness in her joints. She already has an autoimmune condition called psoriasis that causes red, flaky and scaly patches to appear on her skin, which she had developed at age 25 after catching a cold. Now, at age 38, she was informed that her psoriasis has morphed into psoriatic arthritis.

According to the National Psoriasis Foundation, 125 million people worldwide suffer from psoriasis. Furthermore, it’s estimated that 1 in 5 individuals with psoriasis will develop psoriatic arthritis in their lifetime.

Kardashian West said that her symptoms, including joint pain in her hands, got so bad that she was unable to even pick up a toothbrush. An initial blood test she took came back as positive for lupus and rheumatoid arthritis, but it was later shown to be a false positive after a review of her symptoms and getting an ultrasound of her hands.

Despite the harrowing diagnosis, Kardashian West is maintaining a positive attitude, saying “It’s still painful and scary, but I was happy to have a diagnosis. No matter what autoimmune condition I had, I was going to get through it, and they are all manageable with proper care.”

The star also bonded with fellow beauty mogul and fashion model Winnie Harlow, who has an autoimmune condition called vitiligo. As she revealed during a recent interview with Jimmy Fallon, Kardashian West spoke to Harlow for over an hour to get her ‘opinion and advice’ on her autoimmune diagnosis.

To learn more about psoriasis and psoriatic arthritis, visit the National Psoriasis Foundation website.

J.K. Rowling has made a multi-million dollar donation to fund MS research, at a clinic named after her late mother

J.K. Rowling Donates Millions to Fund Multiple Sclerosis (MS) Research

J.K. Rowling, renowned author of the Harry Potter book series, has made a generous donation to fund Multiple Sclerosis (MS) research in the U.K.

Her donation, in the amount of 15.3 Million British Pounds (equivalent to $18.8 Million USD), will be used to construct a new facility for the Anne Rowling Clinic at the University of Edinburgh, which is dedicated to MS research.

The Anne Rowling Clinic was established at the Scotland-based university in 2010, when J.K. Rowling had made another generous donation to fund MS research. The clinic was named after her mother, who suffered from MS and passed away due to complications from the disease at the young age of 45.

Rowling has said that she is immensely proud of the work that the clinic has accomplished, and that they are providing “practical, on the ground support and care for people with MS.” The University’s Vice Chancellor, Professor Peter Mathieson, also commented, “We are immensely honored that J. K. Rowling has chosen to continue her support for the Anne Rowling Regenerative Neurology Clinic. This inspiring donation will fund a whole new generation of researchers who are focused on discovering and delivering better treatments and therapies for patients.”

To learn more about the Anne Rowling Clinic and to view a video of their important work, click here.

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Seeking treatment for chronic illness: when desperation takes over

Allyson Byers was desperate to find a treatment that worked for her painful chronic skin condition.

I recently read an article by Self magazine about a young woman named Allyson Byers who suffers from a chronic skin condition called Hidradenitis Suppurativa (HS). According to the Hidradenitis Suppurativa Foundation, HS causes painful abscesses and boils to form in the folds of the skin, often around hair follicles, such as the underarms and groin. While the exact cause of HS in unknown, it is believed to be autoimmune in nature.

Although the condition isn’t actually rare, with about 1-4% of the general population affected, HS is often misdiagnosed as other conditions, like cystic acne. Patients also frequently don’t tell their physicians about their symptoms due to embarrassment, until they’ve reached stage 3 of the disease (at which point, surgery may be required).

Allyson was fortunate to have been diagnosed six months after the onset of the disease, as a result of a knowledgeable family physician who recognized the tell-tale symptoms. She then went on to see a dermatologist, who prescribed a variety of treatments, from antibiotics, to diabetes medication, hormone-suppressing drugs and even immunosuppressants. But nothing seemed to quell the prognosis of the disease, and eventually, Allyson found herself in so much pain, she couldn’t even raise her arms or even walk, due to the abscesses in her underarms and groin. It even affected her sleep.

Needless to say, she was desperate for a cure- or at least a treatment. Allyson said that in her desperation, she turned to alternative medicine to help. She tried everything from special diets, like the autoimmune protocol (AIP), to supplements and topical solutions (like turmeric, tea tree oil and special soaps). She even saw a chiropractor for a controversial diagnostic test called applied kinesiology, which involves exposing oneself to potential allergens and measuring changes in muscle strength. She spent thousands of dollars on unproven ‘treatments’ in her quest to reduce her painful symptoms.

I know all too well what it’s like to be Allyson—I have HS myself. Unlike her, however, it took six years for me to get a diagnosis (the doctors I had seen in Canada hadn’t even heard of the disease). Before I got diagnosed, I was so desperate for a cure that I purchased different creams, salves and ointments online, that had no medical proof, but that claimed to ‘cure’ my symptoms. One of the salves I bought caused a horrible burning sensation on my skin; another, an oil made out of emu fat (I’m not joking!), did absolutely nothing other than make my skin oily. Some of these so-called ‘treatments’ may have even made my condition worse.

Several members of my family, who are big proponents of alternative medicine, even brought me to a naturopath in the hopes of combating my Sjögren’s Syndrome symptons. I followed various different diets to no avail, took all types of unproven supplements, and even tried chelation therapy, which involves the intravenous administration of drugs to remove heavy metals from the body (this can even result in death). Although I am not against exploring alternative treatments and making lifestyle changes, none of these treatments improved my condition, and they cost even more than science-backed methods.

Like Allyson, I am tired of always trying to ‘chase’ a new treatment, scientific or not, in the hopes of finding a cure. Although I will never truly give up, I would urge others suffering from chronic illnesses not to get desperate; or at least to not allow your desperation to cloud your judgement. If you’re going to try an alternative therapy, at least run it by your physician first, so that you can ensure it’s safe before testing its effectiveness.

Have you had any success treating your condition with alternative medicine? Comment below!

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10 Facts About Sjögren’s Syndrome

According to the Sjögren’s Syndrome Foundation (SSF), Sjögren’s is a systemic autoimmune disease that impacts the entire body, including the eyes, mouth, joints, nerves and major organs. In honor of World Sjögren’s Day, read on to learn 10 facts about this chronic autoimmune condition.

1. It is more common than you think

The SSF estimates that there are as many as 4 million Americans living with the disease, and it’s the second most common autoimmune condition. The exact prevalence of the condition is difficult to determine, however, since the symptoms tend to mimic those of other conditions, such as lupus, rheumatoid arthritis, multiple sclerosis, fibromyalgia and chronic fatigue syndrome. It can even be confused with menopause, allergies, and drug side effects.

2. It mostly affects women

The SSF states that nine out of 10 Sjögren’s patients are women, and the average age of diagnosis is the late 40s. However, the disease can impact anyone of any age, including men and children as well.

3. It causes extensive dryness

Sjögren’s Syndrome develops as a result of the body’s immune system attacking and destroying the body’s exocrine, or moisture-producing, glands. As a consequence, patients experience widespread dryness throughout their body, but especially impacting their eyes, nose, mouth, skin, vagina and joints.

4. It affects the eyes

The disease is often first detected as a result of eye-related symptoms. This includes dry, gritty eyes that feel like sandpaper when blinking and swollen tear glands. Dry eyes can in turn lead to blurred vision, infections, corneal ulcerations and blepharitis. Several of the eye tests that can be used to help diagnose the condition include a Schirmer test, to measure tear production, and a Rose Bengal and Lissamine Green test, to examine dry spots on the eye’s surface.

5. It affects the mouth, throat and nose

Sjögren’s also affects one’s mouth, throat and nasal cavity; the main symptom being dryness. This, in turn, leads to a whole host of other symptoms, such as mouth sores, dental decay, oral thrush (a yeast infection of the mouth), recurrent sinusitis, nose bleeds, heartburn, reflux esophagitis, and difficulty speaking and swallowing. Some physicians administer a lip gland biopsy as a part of the diagnosis process.

6. It impacts one’s joints too

As the immune system destroys the body’s moisture-producing glands, this results in a decrease in synovial fluid, which helps to keep the joints lubricated. This causes inflammatory joint pain and musculoskeletal pain, and can even lead to the development of rheumatoid arthritis, as shown through a positive Rheumatoid Factor (RF) reading in the blood. In fact, the main physicians who treat Sjögren’s are rheumatologists.

7. Neurological problems are also common

Sjögren’s causes a variety of nervous system symptoms, including nerve pain and peripheral neuropathy (a numbness and tingling in the extremities). Other neurological problems include difficulty concentrating and memory loss, often referred to as “brain fog”.

8. The prognosis of the disease varies

Patients may find that their symptoms plateau, worsen, or, uncommonly, go into remission. A French research study published in Rheumatology also found that early onset primary Sjögren’s Syndrome carried a worse prognosis over the course of the disease (‘early onset’ is defined as a diagnosis before age 35). While some Sjögren’s patients experience mild discomfort, others suffer debilitating symptoms that greatly impair their quality of life.

9. It can increase one’s risk of cancer

A German study found that Sjögren’s Syndrome moderately increases one’s risk of developing Non-Hodgkin’s Lymphoma (NHL). NHL is a cancer of the lymphatic system, which includes the lymph nodes, spleen, and other tissues. The lifetime risk of developing NHL by age 80 is 8% among men and 5.4% among women with Sjögren’s. This is compared to a risk of 1.6% of men and 1.1% of women in the general population.

10. There is hope

If you or a loved one has been diagnosed with Sjögren’s, check out the SSF’s video series, Conquering Sjögren’s, and their patient-published Self-Help Booklet. The foundation’s website, www.sjogrens.org, also contains a wealth of resources on the disease, including information about treatment options, survival tips, fact sheets, and even template letters for your health insurance company. You can also check out their extensive network of support groups.

Thank you for stopping by Autoimmune Warrior. If this article was informative to you, please like, share, and comment below!

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iMD Partners with the American Autoimmune Related Diseases Association (AARDA); Is There a Connection Between Adverse Childhood Experiences (ACE) and Autoimmune Disease?

iMD Partners with the American Autoimmune Related Diseases Association (AARDA)

On July 17, 2019, iMD Health Global, a Toronto-based health technology company, announced that it has formed a strategic partnership with the American Autoimmune Related Diseases Association (AARDA). The partnership will help enhance communication between physicians and autoimmune disease patients to improve health outcomes.

iMD Health provides revolutionary technology to facilitate dialogue between physicians and patients inside the examination room. The iMD platform enables healthcare professionals to instantly access thousands of educational graphics, videos and resources at the point of care. The company’s platform is currently being used across Canada, and is now expanding across the United States as well.

Virginia Ladd, Executive Director & President of the AARDA commented, “With iMD, quick and easy access to a robust and visually appealing resource is now literally at the physician’s fingertips. With a better understanding of their conditions, patients can make informed and responsible decisions about managing their health and the required steps to address their condition.”

To read more about this exciting new partnership, click here.

Is There a Connection Between Adverse Childhood Experiences (ACE) and Autoimmune Disease?

Dawn Debois, a columnist on Lambert-Eaton News, explores the relationship between Adverse Childhood Experiences (ACE) and the development of autoimmune disease.

Debois has several autoimmune conditions herself, including Lambert-Eaton Myasthenic Syndrome (LEMS), psoriatic arthritis, Hashimoto’s thyroiditis, and ankylosing spondylitis. These conditions lead to her being diagnosed with multiple autoimmune syndrome.

Debois believes that the early childhood trauma that she experienced from losing her mother before the age of five and being placed into foster care may have triggered the onset of these autoimmune conditions. She completed a questionnaire that revealed that she had an ACE score of four, which is considered high, and is a high predictor of diagnosed autoimmune disease in adulthood, according to this study.

She further discusses the prevalence of the protein HLA-B27 in her blood, which can lead to a higher risk of developing certain autoimmune diseases. Therefore, while early childhood trauma may be an environmental factor affecting the pathogenesis of autoimmune disease, there are genetic factors as well.

To read more about Deb’s story and the link between Adverse Childhood Experiences (ACE) and autoimmunity, click here.

Actress Jameela Jamil Describes Life with Autoimmune Disease

British actress and model Jameela Jamil struggles with daily living with two chronic illnesses, including an autoimmune disease.

British actress and model Jameela Jamil took to Instagram this week to describe her struggle of living with an autoimmune disease. The 33-year-old suffers from Hashimoto’s Thyroiditis, an autoimmune disease in which one’s immune system attacks the thyroid gland, causing hypothryoidism (an underactive thyroid). This, in turn, can lead to symptoms such as weight gain, fatigue and depression.

Jamil wrote, “Living with an autoimmune condition is a real pain in the arse, and it irrationally makes you feel like a failure for not being able to “live it up” like other “normal” people. Shout out to all of us who struggle with this, and go through all of the incredible shitty days, and make it through each one. Even if it’s just by the skin of our teeth. We are LEGENDS for our strength of character.”

In addition to Hashimoto’s, Jamil also revealed that she has Ehler’s-Danlos syndrome (EDS) type 3. While this chronic illness is not autoimmune, in causes various painful symptoms, such as joint hypermobility, loose joints, poor wound healing and easy bruising. Like Hashimoto’s, there is no cure for EDS. Jamil confirmed her condition after a fan asked her why her arm was overextended in a photo on Twitter, then subsequently posted a video stretching her skin.

Jamil also described how hard it is to take care of herself, while others around her experience few health problems, even if they don’t care for their health. She wrote on her Instagram page, “Shout out if you are so fucking tired of having to protect yourself in a bubble while so many other people are able to just eat what they want, take drugs, stay out all night, drink a lot, take risks, do sports….etc. But you make one less than perfect choice and your day/week is ruined. The envy is real…I see you. I hear you. I feel you. I’m with you.”

To read more about Jameela Jamil and her fight against Hashimoto’s and EDS, click here.

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How a 71-year-old man got diagnosed with Autoimmune Encephalitis (AE)

Robert Given was a 71-year-old Accountant who ran his own CPA firm and was heavily involved in his local community. Although he didn’t have any prior history of autoimmune disease, he suddenly found himself impacted by a severe autoimmune condition.

While dining out with friends, Given suddenly slumped over, had a seizure, and urinated on himself. Restaurant patrons helped him to lay on the floor and called an ambulance. By the time the ambulance arrived, he had regained consciousness but was confused, refusing to step into the ambulance until his wife told him to.

After being evaluated by a number of physicians, including an internist and a neurologist, the medical professionals made several interesting discoveries. Given had had a sudden drop in blood pressure that was uncharacteristic for someone with well-controlled high blood pressure like himself. His wife also reported that he was losing his balance, had difficulty sleeping and sometimes had slurred speech. He was also highly talkative, to the point that it appeared to be logorrhea – a constant need to talk, even if the speech is often incoherent and repetitive.

Given had a second seizure, and was once again transported to the hospital. After this second episode, his doctor pondered what condition could possibly cause a sudden onset of both neurological and psychiatric symptoms. He hypothesized that his patient might have either Multiple Sclerosis (MS), or some type of heavy metal toxicity and ordered a round of tests to see if this was the case.

The tests came back negative for MS and heavy metals, and his medical team thought that they had to go back to the drawing board. Suddenly, however, his internist Dr. Hersch realized that he had seen a similar case several years prior; the patient had died, but his test results had revealed that he had autoimmune encephalitis (AE), a group of conditions in which the immune system mistakenly attacks the brain.

Dr. Hersch ordered a new round a tests that confirmed that Robert Given did indeed have a type of autoimmune encephalitis caused by a rogue antibody called CASPR2. Symptoms included fluctuations in blood pressure and heart rate, loss of balance, insomnia, and personality changes, and the majority of patients were men over the age of 65- just like Given!

Given has been receiving treatment for his condition at the Mayo Clinic for the last three years. Due to the difficult nature of this disease, his recovery is slow, but he is relieved to have been diagnosed in time to receive life-saving medication.

The Autoimmune Encephalitis Alliance says that while Given is lucky to have received a diagnosis, their aim is to raise awareness so that others with AE do not have to rely on luck to determine the outcome of the disease.

To read the original story by Dr. Lisa Sanders from the New York Times, click here. Also, check out this trailer for Brain on Fire, a movie based on a real-life story of a woman with AE.

Girl with Autoimmune Disease Creates Teddy Bears that Hide IV Bags; British Columbia Mother Sues Over Breast Implant Risks; Woman Describes her Experience with Multiple Autoimmune Diseases

Girl with Autoimmune Disease Creates Teddy Bears that Hide IV Bags

Medi-Teddies are designed to hide IV bags for children receive intravenous treatments

Ella Casano was diagnosed with an autoimmune condition called Idiopathic Thrombocytopenia Purpura (ITP) when she was just 7 years old. ITP is known to cause low platelet levels, excessive bruising and bleeding.

Now 12 years old, Ella receives IV infusions every 8 weeks to ease the symptoms of her condition. As part of a class project, she had to come up with a business idea, and, thinking about her experience with IV infusions and how scary the medical equipment can look to children, she came up with the idea of the “Medi-Teddy”, a teddy bear that hides IV bags.

Ella’s family started a GoFundMe page to raise $5,000 to provide 500 Medi-Teddies to kids in need. For more on this story and to learn how you can donate, click here.

British Columbia Mother Sues Over Breast Implant Risks

Samara Bunsko is involved in a class action lawsuit alleging her breast implants made her sick.

Samara Bunsko, 28, of Maple Ridge, British Columbia, Canada, is suing breast implant manufacturer Allergan over allegations that her implants caused her to develop various health issues, including hair loss, irregular thyroid and iron levels, headaches, fatigue and cysts.

Samara is the lead plaintiff in two proposed class action lawsuits against breast implant manufacturers, alleging that they did not disclose the risk of developing certain cancers or autoimmune diseases as a result of the implants.

Dr. Jan Tervaert, Director of Rheumatology at the University of Alberta’s School of Medicine, says that research shows that patients with a genetic predisposition for autoimmune disease have the highest risk of developing symptoms. Furthermore, patients who have had implants the longest are the least likely to experience a cessation in their symptoms once the implants are removed.

Health Canada is conducting a safety review of systemic symptoms caused by breast implants, including the development of autoimmune conditions. To learn more, click here.

Amy Hoey has five different autoimmune diseases, none of which have a cure.

Woman Describes her Experience with Multiple Autoimmune Diseases

Amy Hoey was a young teen when she began to experience a myriad of symptoms, including severely dry skin and body aches. She was told by professionals that she was likely just experiencing eczema and growing pains, when in fact, she had an autoimmune condition called psoriasis. Psoriasis can affect the joints and develop into psoriatic arthritis, which is what happened to Amy.

Later, Amy began to experience extreme fatigue, hair loss, kidney infections and chest pain. She went on to receive a diagnosis of Hashimoto’s thyroiditis, an autoimmune condition in which the immune system attacks the thyroid gland.

She started to experience even more symptoms, including a butterfly-shaped rash on her face, mouth ulcers, and memory loss, which lead to the diagnosis of systemic lupus erythematosus. Lupus causes damage to the body’s internal organs, skin and joints.

To top it off, Amy also has celiac disease, an autoimmune disease in which the body’s immune system damages the small intestine in response to consuming gluten, the protein found in wheat.

Amy felt like she constantly had the flu. Worse still, the physicians she worked with seemed to know little about autoimmune conditions, and one even Googled her conditions in front of her! She also has had allergic reactions to medications used to treat autoimmune disease, and also has a genetic condition that makes her more susceptible to infections, which can be a challenge, since many autoimmune treatments work by suppressing the immune system.

Amy says her best advice is to focus on what you can do, not what you can’t do. While she had a difficult time accepting this at first, since she used to be an athlete, maintaining a positive attitude and working with a knowledgeable rheumatologist have been helpful for her treatment.

To read more about Amy’s story, click here.



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Youth Take On Celiac Disease Through Outreach Program; 7-year-old with Rare Autoimmune Disease Needs Life-saving Bone Marrow; Australian Woman Describes Her Journey with Multiple Sclerosis; Actress Nicole Beharie Exits Show due to Autoimmune Disease; Dallas Cowboys Frontman Tackles Autoimmune Condition and Injuries

Dr. Dale Lee is the Director of the Celiac Disease Program at Seattle Children’s Hospital

Youth Take On Celiac Disease Through Outreach Program

Last month was Celiac Disease Awareness Month. While Celiac is one of the most common autoimmune diseases, experts at the Seattle Children’s Hospital estimate that for every diagnosis, eight cases are overlooked.

As a result, the hospital has put together an outreach program that allows youth with Celiac disease the opportunity to raise awareness, organize support groups, and mentor other youth with the disease.

There are currently 11 youth members on the Celiac Youth Leadership Council (CYLC), and one of their current initiatives is running a gluten-free food drive for a local food bank.

The most common symptoms of Celiac disease include abdominal pain, diarrhea, constipation, weight loss, nausea, and fatigue. Other symptoms include anemia, joint pain, arthritis, osteoporosis, peripheral neuropathy, seizures, canker sores, skin rashes, fatigue, depression and anxiety. In children, the disease can also cause irritability, stunted growth, delayed puberty, and dental damage.

To learn more, click here.

Asaya Bullock (left) pictured here with his sister, is in grave need of a bone marrow match

7-year-old with Rare Autoimmune Disease Needs Life-saving Bone Marrow

Asaya Bullock, a 7-year-old boy from New York, is searching for a donor willing to donate matching bone marrow.

Asaya was born with a rare, life-threatening autoimmune disease called IPEX syndrome. Symptoms include joint pain, body aches, memory loss, fatigue and stomach problems. Doctors said he had two years to live, but, miraculously, he is still alive seven years later.

A bone marrow transplant would greatly help Asaya’s condition; however, since he is of mixed ancestry (part African part Caribbean), finding a matching donor is proving to be a challenge. According to Be the Match, an organization that operates the world’s largest bone marrow registry, the more genetically diverse an individual is, the more difficult it is to find a matching donor.

To learn more about Asaya’s story and how you can join the Be the Match registry, click here.

Monique Bolland describes her harrowing journey living with Multiple Sclerosis (MS)

Australian Woman Describes Her Journey with Multiple Sclerosis

Monique Bolland, 36, from Australia, shares her story living with Multiple Sclerosis (MS).

Bolland was first diagnosed with this incurable autoimmune disease when she was just 22. At the time, she didn’t quite comprehend the severity of her diagnosis.

She says that she first realized how bad her MS symptoms were when she was cutting bread and accidentally cut her hand, but didn’t even notice as a result of the nerve damage and numbness caused by the disease.

MS impacts an estimated 2.5 million people worldwide, and 70% of MS patients are female. Symptoms include impaired motor function, numbness, fatigue, heat sensitivity, optic nerve damage, and more.

Bolland says that living a healthy lifestyle is imperative to managing her MS symptoms. This includes consuming a diet rich in vitamins D, B12 and omega-3 fatty acids, reducing stress and inflammation, and staying active. She also gets monthly injections of Tysabri, an immunosuppressive drug. In addition, she launched a nutrition supplement and health product line called Nuzest with her father, which supports MS research.

To learn more about Bolland’s story, click here.

Actress Nicole Beharie reveals autoimmune disease caused her exit from hit show

Actress Nicole Beharie Exits Show due to Autoimmune Disease

Nicole Beharie, famed actress on Fox’s hit show, Sleepy Hollow, confessed to fans on Instagram that she left the show abruptly as a result of an autoimmune disease she has been keeping secret for the last five years.

Although Beharie didn’t reveal the exact autoimmune condition she has, she states that it caused her to experience skin rashes and fluctuations in her weight. As a result, her character on the show, FBI agent Abby Mills, was killed off in the season 3 finale, allowing her to take a much-needed break for her health.

Beharie says setting boundaries and limitations, as well as changing her diet, were key to improving her physical and mental state.

To read more about her story, click here.

Travis Frederick missed an entire NFL football season as a result of his autoimmune disease

Dallas Cowboys Frontman Tackles Autoimmune Condition and Injuries

Travis Frederick, the Dallas Cowboys’ all-star center, revealed that he suffers from an autoimmune condition called Guillain-Barre syndrome. This caused him to miss playing an entire NFL football season, while a backup played in his place. He also revealed he had two surgeries during this time.

Frederick is now expected to return to the starting lineup this upcoming season. However, since he is still experiencing lingering effects of Guillain-Barre, he is being brought back on to the field slowly.

To learn more about Frederick’s story, click here.

Type 1 Diabetes Patients Drive to Canada for Affordable Insulin; Executive Gets Purple Mohawk to Benefit Kid with Autoimmune Disease

Type 1 Diabetes Patients Drive to Canada for Affordable Insulin


Lija Greenseid of Minnesota holds up insulin for her 13-year-old daughter that she purchased from Fort Francis, Ontario during an organized caravan ride to Canada. 

Type 1 Diabetes is an autoimmune disease in which the body’s immune system attacks and destroys pancreatic cells, rendering them incapable of producing insulin. Insulin is a hormone that the body needs to get glucose from the bloodstream into its cells. As a result, patients with Type 1 Diabetes rely on prescription insulin in order to survive.

Unfortunately, for the majority of Americans, the cost of life-saving insulin keeps going up year after year. As a result, Quinn Nystrom, from Minnesota, organized a caravan to Canada to fill her prescription for insulin, where it sells for a fraction of the cost.

As reported by the Canadian Broadcasting Corporation (CBC), insulin costs significantly less in Canada, thanks to the Patented Medicine Prices Review Board, which sets limits for the maximum price that can be charged for patented drugs. As a result, a vial of insulin that costs $300 in the US is only $30 in Canada, even when it comes from the same brand.

Many patients who cannot afford their medication will ration their insulin. Unfortunately, as a result of not taking the required minimum dose, patients who ‘ration’ their insulin can die.

That’s what happened to Alec Smith-Holt, a 26-year-old man from Minnesota who died in 2017 when he couldn’t afford $1,300 in insulin, and decided to ration his remaining supply. His body was discovered five days later. His mother, Nicole Smith-Holt, joined the caravan to Canada as a symbolic gesture in memory of her son.

To read more about this story, click here.

Executive Gets Purple Mohawk to Benefit Kid with Autoimmune Disease

Cayden Krueger, a young patient with ITP, poses with John Stevenson, who is supporting his Pump it Up for Platelets campaign.

Cayden Krueger, from Madison, Wisconsin, was diagnosed with thrombocytopenia purpura (ITP) when he was just 6 years old. ITP is an autoimmune disease that causes patients to have too few platelets in their blood, resulting in easy bruising and bleeding. Cayden has been raising awareness about ITP by launching a Pump it Up for Platelets fundraiser and sporting a purple mohawk.

When John Stevenson, a Senior Director of Financial Services at US Cellular, heard about Cayden’s story, he challenged his employees to raise money for the Pump it Up for Platelets fundraiser, and pledged to get a purple mohawk himself if they could meet a $1,000 goal. His team ended up raising $2,000, so Stevenson found himself with a new hairdo, and Cayden even got to make the first cut.

To read more about this story, click here.

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My favorite Autoimmune Disease YouTubers

Zach uses his platform on YouTube to share his story about ankylosing spondylitis

Zach from The Try Guys

Zach is best known for his work as a videographer for media giant BuzzFeed. During his time at Buzzfeed, Zach created a video about his struggle with an autoimmune disease called ankylosing spondylitis which received over 5 million views. In addition to having difficulty getting a diagnosis for his condition, Zach continued to struggle due to incessant back pain even after being diagnosed. He stresses the importance of being proactive with your treatment plan, no matter the severity of your symptoms. Check out his video below!

Zach’s video: I have an Autoimmune Disease

Live | Hope | Lupus

Samantha has been creating advocacy videos on chronic illness for the past 10 years. She created the YouTube channel Live Hope Lupus to create a space where those with chronic illnesses could get information and support. Samantha herself lives with the autoimmune conditions lupus, Sjogren’s Syndrome and autoimmune hemolytic anemia, as well as other related conditions, such as TMJ, costochondritis and Raynaud’s Phenomenon. She encourages others to subscribe to her channel to follow along with her journey. Check out her video below!

Samantha’s video: Lupus 101

Adamimmune

Adam started his YouTube channel two years ago after being inspired to share his story of healing. He has an autoimmune condition called Hidradenitis Suppurativa (HS), which affects hair follicles in the skin. After reaching stage 3 of the disease and experiencing significant pain, Adam implemented the Autoimmune Protocol (AIP) diet and found that his HS symptoms went into remission after three months. He is a big advocate for lifestyle changes in the treatment of autoimmune disease and shares his AIP recipes and grocery hauls on his channel. Check out his video below!

Adam’s video: Hidradenitis Suppurativa: Life Before Remission (My HS Story)

Surviving as Mom

Meredith, who goes by Meri, vlogs about her experience with an autoimmune disease called Sjogren’s Syndrome, which she says makes each day a little more challenging. She is an active stay at home mom with four sons, one of whom has various special needs. Meri’s channel contains many videos about her life as a stay at home mother, in addition to a Sjogren’s Syndrome video series. Check out her video below!

Meri’s video: Day in the Life with Sjogren’s Syndrome

Kalie Mae

Kalie recently started her YouTube channel in the hopes of being able to connect with other chronic illness sufferers. She discusses various autoimmune diseases and related conditions on her channel, including Fibromyalgia, Chronic Fatigue Syndrome, Sjogren’s Syndrome, Ehler’s Danlos Syndrome, Chron’s Disease and more. She is very candid in talking about chronic illness, including discussing the impact of her conditions on her mental health, career and relationships. Check out her video below!

Kalie’s video: Anxiety and Depression Chronic Illness Awareness

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Carrie Ann Inaba Opens Up About Struggling with Fibromyalgia and Other Autoimmune Conditions; Sjogren’s Syndrome Foundation Launches YouTube Video Series; Researchers Discover New Autoimmune Disease Causing Muscle Pain and Weakness

Carrie Ann Inaba Opens Up About Struggling with Fibromyalgia and Other Autoimmune Conditions

Carrie Ann Inaba shares emotional Instagram post about her struggles as an #AutoimmuneWarrior

Carrie Ann Inaba, world-famous dancer and judge on the reality TV show Dancing with the Stars, opened up to fans about her struggle living with multiple autoimmune and chronic health conditions, including fibromyalgia, Sjogren’s syndrome, rheumatoid arthritis, spinal stenosis and antiphospholipid syndrome (APL).

Carrie Ann shared that she has come to feel ashamed about her health issues, stating “I feel so much shame when I go through these things, because I want to be what people see. And people see a healthy person, from the outside.” On the positive side, Carrie Ann says that confronting her health issues has helped her to learn about who she is, besides being a “sexy dancer chick”. 

Carrie Ann says that despite the pain and other symptoms that she battles on a daily basis, she credits her improved health to staying active through practicing yoga and pilates, as well as seeking altnerative treatments like Craniosacral therapy, acupuncture and Reiki.

To learn more about her inspiring story, click here.

The Sjogren’s Syndrome Foundation (SSF) launches a new Exploring Sjogren’s video series

Sjogren’s Syndrome Foundation Launches YouTube Video Series

The Sjogren’s Syndrome Foundation (SSF) launched an informative new video series called Exploring Sjogren’s. The videos aim to discuss the complexities of living with the disease and the issues involved with conquering it.

The foundation says that the a new episode will premiere every Monday on their YouTube channel. To learn more about the video series, visit the SSF website by clicking here.

To view the first episode in the series, check out the Exploring Sjogren’s YouTube channel here.

Immune scavenger cells called histiocytes (in green) crowd around muscle fibres (in red), damaging them and causing muscle pain and weakness

Researchers Discover New Autoimmune Disease Causing Muscle Pain and Weakness

Researchers at the Washington University School of Medicine in St. Louis, Missouri have identified a new autoimmune disease that causes muscle pain and weakness.

Dr. Alan Pestronk, who leads the university’s Neuromuscular Disease Clinic and works as a professor of neurology, immunology and pathology, says that they have only observed four cases of the disease over the past 22 years.

Dr. Pestronk first observed the disease in 1996, when looking at microscope slides of muscle from a patient experiencing muscle pain and weakness. He noticed that immune scavenger cells called histiocytes that normally feed on dead material were crowded around injured muscle fibers.

He and his colleagues then encountered three more similar cases over more than two decades, each time analyzing detailed biopsies of the patients’ muscle tissue. The four cases discovered were enough to name a new autoimmune disease, large-histiocyte-related immune myopathy.

To learn more about the discovery of this autoimmune disease, click here.

Is there a link between diet and autoimmune disease?

About 8 years ago, I saw a powerful TedTalk by Dr. Terry Wahls, called Minding Your Mitochondria.

Dr. Wahls is a physician who was diagnosed with Multiple Sclerosis, a degenerative autoimmune disease affecting the body’s nervous system. After undergoing traditional therapies for the condition, including chemotherapy and usage of a tilt-recline wheelchair, Dr. Wahls studied biochemistry and learned about the nutrients that played a role in maintaining brain health.

After noticing a slow down in the progression of her disease after taking nutritional supplements, she decided to focus her diet on consuming foods that contained these brain-protecting nutrients. Only a year after beginning her new diet, Dr. Wahls was not only out of her wheelchair, but she had just finished her first 18-mile bike tour! She went on to develop a dietary regimen for those with autoimmune conditions, called the Wahls Protocol.

So, this raises the question, does diet play a role in the development of (and fight against) autoimmune disease?

There is evidence to suggest that there is a link between autoimmunity and one’s diet. For example, I recently wrote about a study published by NYU’s School of Medicine, in which researchers found that the autoimmune disease lupus is strongly linked to imbalances in the gut’s microbiome.

Furthermore, the Multiple Sclerosis (MS) Society of Canada also released a report detailing Vitamin D recommendations for MS patients, as a result of studies linking Vitamin D deficiency to the disease. Vitamin D is produced by our skin through sun exposure, but also comes from food sources such as fish, dairy and eggs.

Tara Grant, who has a condition called Hidradenitis Suppurativa (HS), an autoimmune condition of the skin, believes that there is a direct link between autoimmunity and diet, as a result of a concept called leaky gut syndrome.

Leaky gut syndrome, also known as intestinal permeability, occurs when the tight junctions between cells in the body’s digestive tract begin to loosen. This enables substances like bacteria, toxins and undigested food particles to enter your bloodstream. Consequently, your immune system reacts to attack these foreign substances, which leads to the development of inflammation and autoimmune disease.

After implementing a restrictive, dairy-free, gluten-free paleo diet, Tara has found that her HS symptoms have completely gone into remission. She now promotes the paleo lifestle on her blog, PrimalGirl, and even released a book, The Hidden Plague, which talks about her struggle treating HS through traditional means, and her journey to healing.

Now I’d like to hear from you Autoimmune Warriors- has changing your diet impacted your chronic health condition in any way? What changes have you implemented that have worked?

Learn More

To read more about the Wahls Protocol, check out Dr. Wahls’ website, and click here to get her book on Amazon.

To read more about Tara Grant’s journey to being HS-free, click here to get her book on Amazon, and check out her amazing gluten-free dough recipe, here.