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.

Top News in Autoimmune Disease – October 8, 2019

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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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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Top News in Autoimmune Disease – July 20, 2019

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.

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.

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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