Top News in Autoimmune Disease – June 15, 2019

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.



Top News in Autoimmune Disease – June 1, 2019

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.

Top News in Autoimmune Disease – May 15, 2019

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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Top News in Autoimmunity – Week of May 1, 2019

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.

10 Facts About Systemic Lupus Erythematosus (SLE)

According to the Lupus Foundation of America, lupus is a chronic autoimmune disease that can damage the body’s vital organs, skin and joints. Read on to find out 10 facts about this chronic autoimmune condition.

1. It is more common than you think

Lupus affects 5 million people worldwide, and 16,000 new cases are reported every year, reports the Lupus Foundation of America. In the United States alone, lupus is estimated to affect up to 1.5 million people. The exact prevalence of lupus among the general population is hard to determine, however, since the symptoms often mimic those of other disorders. For reasons unknown, lupus has become 10 times more common in industrialized Western countries over the last 50 years.

2. It mostly affects women

According to the U.S. National Library of Medicine, Females develop lupus nine times more often than their male counterparts. It is more common in younger women, peaking during the childbearing years; however, 20 percent of lupus cases occur in people over age 50. Because lupus largely impacts women, sex hormones are thought to play a role in the onset of this complex disease.

3. Your ethnicity may play a role

In the United States, lupus is more common in people of color, including those of African, Asian, Hispanic/Latino, Native American or Pacific Islander decent. In these populations, lupus is known to develop at a younger age and tends to be more severe as well.

4. Skin problems are a telltale sign

One of the characteristic signs of lupus is a red rash across the cheeks and nose bridge, which worsens when exposed to sunlight, called a ‘butterfly rash’ due to its shape. Other skin problems include calcium deposits under the skin, damaged blood vessels in the skin, and tiny red spots called petechiae, which occurs as a result of bleeding under the skin. Ulcers may also occur in the mucosal lining of the skin. To read more about how lupus affects the skin, click here.

5. Heart problems are also common

Pericarditis, an inflammation of the sac-like membrane around the heart, and abnormalities of the heart valves, which control blood flow, can occur in patients with lupus. Heart disease caused by fatty buildup in the blood vessels, called atherosclerosis, is more prevalent in those with lupus than the general population. To read more about how lupus affects the heart, click here.

6. Lupus affects the nervous system too

A lesser known fact about lupus is its impact on the body’s central nervous system. For example, lupus causes damaging inflammation, which may result in peripheral neuropathy, which involves abnormal sensations and weakness in the limbs. Lupus can also cause cognitive impairment, also called ‘brain fog’, which makes it difficult to process, learn and remember information. Seizures and stroke may also occur.

7. It may be genetic

Lupus tends to run in families. However, the exact inheritance pattern is unknown. Certain gene variations can increase or decrease the risk of developing the disease; however, not everyone with the disease will get lupus. Relatives of those with lupus have a 5-13% chance of developing the disease. Sometimes, someone with a family member with lupus may inherit a different, but related, autoimmune disease, such as Sjögren’s Syndrome or Rheumatoid Arthritis (RA).

8. Lupus can impact one’s quality of life

According to research conducted by the Lupus Foundation of America, 65% of lupus patients state that chronic pain is the most difficult part of having the disease. Furthermore, 76% of patients say that the disease has caused them to develop fatigue so severe that they have had to cut back on social activities. A further 89% of patients report that they can no longer work full-time as a result of their disease. Lupus can also cause mental health problems such as anxiety and depression.

9. The prognosis of the disease varies

Patients with lupus often have episodes during which the condition worsens (called ‘exacerbations’ or ‘flares’), followed by periods of remission. However, since lupus does not currently have a cure, it is a life-long condition. Lupus is known to get worse over time, and damage to the body’s vital organs can be life-threatening. This is why it is important to work with a team of medical professionals that understand the disease.

10. There is hope

If you or a loved one has been newly diagnosed with lupus, check out the Lupus Foundation of America’s newly diagnosed webpage. It is full of resources about the disease, including treatment options, financing your care, and tips on how to live a healthy lifestyle with the disease. You can also sign up for their 8-week email series with tips and resources to empower you to learn more about your condition. The foundation also recently released a new research center on their website, Inside Lupus Research, so that you can keep up-to-date on all of the latest scientific reports, disease management and treatment news.

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3 Things Not to Say to Someone with a Chronic Illness

1. “Why don’t you just try exercising more and eating healthier?”

This is one of the most common questions I get asked when I first tell a friend that I have a chronic illness. And while it may be a well-intentioned question, the reality is, autoimmune conditions do not yet have a cure, and eating well and exercising is unlikely to make one’s symptoms dissipate.

While some patients may swear by a certain diet, such as going gluten-free, or adopting a particular exercise regimen, many others do not see a noticeable difference in their symptoms, despite extensive lifestyle changes. Also, such a sentiment often puts an unnecessary burden on the patient, who may feel like they ‘deserve’ their disease for not adopting ‘enough’ of a healthy lifestyle, when in fact, many scientists believe that there is a strong genetic component to autoimmune and other inflammatory conditions, which is beyond the patient’s control.

So please, the next time you think to tell someone to eat more kale to cure their painful rheumatoid arthritis- think again.

2. “Are you sure that’s what you really have? Maybe it’s just depression?”

When someone confides in you that they have a chronic health condition, they want to feel supported. The last thing they want is a friend or family member putting doubt into their mind about their health.

Furthermore, many patients go years from doctor to doctor seeking an answer about their health problems. When they finally get a diagnosis- although shocking and often devastating- there is a certain amount of relief that one experiences in at least knowing ‘what you have’ and the reassurance that what you’re going through is real. Asking someone “if they’re sure” about their condition, is essentially invalidating their health issues, right when that individual has finally found some closure.

Finally, asking if “it’s just depression” is simply unacceptable. Studies have shown that people with autoimmune conditions have a higher incidence of mental health problems such as depression. However, this shouldn’t be brushed off as “just” depression. Moreover, when I personally have been asked this question in the past, it made me think, ‘is this person saying it’s all in my head?’ This, in turn, made me more reticent about sharing health-related news in the future.

3. “It can’t be that bad, can it? You’re just exaggerating!”

For someone else to brush off your disease is the ultimate slap in the face. Many people with chronic health problems have an invisible illness, meaning that on the outside, they may look fine, but on the inside, they are suffering. Symptoms like chronic pain, organ and tissue damage, and fatigue are not usually noticeable to the naked eye.

Even health care professionals often don’t empathize with their patients’ complaints, telling them that they are exaggerating, or accusing them of being a hypochondriac. The result is that the patient may internalize their suffering, and not turn to their physician or loved ones for the medical help and support they need.

Unless you yourself have experienced the relentlessness of having a chronic condition, you can never know what someone with an invisible illness is going through. All you can do is listen and be there for them.

 

Did you like these tips on what NOT to say to someone with a chronic illness? If so, please like, share, and comment below!