Top News in Autoimmune Disease – Sept. 22, 2019

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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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 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.



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