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 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.

Top News in Autoimmunity – Week of Feb. 20, 2019

Lupus Strongly Linked to Imbalances in Gut Microbiome

Scientists at the NYU School of Medicine have discovered that systemic lupus erythematosus (SLE) is strongly linked to imbalances in the body’s gut microbiome.

The study showed that 61 women diagnosed with lupus had five times more Ruminococcus gnavus gut bacteria compared to 17 women who were healthy and did not have lupus. The study also showed that the abnormal levels of gut bacteria appeared to positively correlate with lupus ‘flares’, which are instances when lupus symptoms, such as joint pain, skin rashes, and kidney dysfuntion, increase dramatically.

Dr. Gregg Silverman, immunologist and one of the lead researchers in the study, commented, “Our study strongly suggests that in some patients bacterial imbalances may be driving lupus and its associated disease flares.”

Dr. Silverman also stated that the study may give way to new treatments for the disease, such as probiotics, fecal transplants, or dietary regimens that prevent the growth of the Ruminococcus gnavus gut bacteria. The study also discusses the role of ‘leaky gut’ in triggering the body’s autoimmune reaction.

To read more about the study, click here.

Immunology ‘Boot Camp’ Emphasizes the Role of Chronic Stress in Autoimmune Disease

Leonard Calabrese, Vice Chairman of rheumatic and immunologic disease at the Cleveland Clinic, emphasized the role of chronic stress in the development of autoimmune diseases during an immunology ‘boot camp’.

During his speech, Calabrese cited data that chronic stress compromised the body’s surveillance of pathogens. As a result, modern stressors, such as PTSD, major depression, and the stress associated with being a caregiver, which are chronic in nature, may trigger the pathogenesis of autoimmune disease. This is in contrast to acute stress, which comes in response to immediate dangers, ‘like our ancestors encountering a saber-toothed tiger’, states Calabrese.

The link between chronic stress and autoimmunity has given way to the development a several new therapies. For example, parasympathetic and vagal nerve stimulation are now in development to treat pain-related and autoimmune conditions, such as Rheumatoid Arthritis (RA) and fibromyalgia.

To read more about this research, click here.

Interested in reading more? See last week’s top news in autoimmunity here.

Top News in Autoimmunity – Week of Feb. 13, 2019

Benefit Event Organized for New York Woman with Scleroderma

A benefit event has been organized by the friends of Krislyn Manwaring, a 25-year old woman with Scleroderma living in Erin, NY.

Scleroderma is an autoimmune condition that causes the body’s soft tissue to harden. Manwaring, who is now on oxygen, is in need of a stem cell transplant. However, her health insurance won’t pay for it.

The benefit event will raise funds to go towards Manwaring’s transplant procedure. According to the event’s Facebook page, over 200 attendees have already RSVP’d for the event.

Young Woman Shares Journey with Autoimmune Encephalitis

Tori Calaunan, a young woman from Las Vegas, shares her journey with anti-NMDA receptor encephalitis with the Autoimmune Encephalitis Alliance.

While in nursing school, Calaunan felt some weakness in her right leg, but brushed it off as nothing serious. As the weakness continued to worsen, she also experienced confusion and dizziness. She passed a neuro test and MRI, however, and doctors told her that everything was fine.

She eventually checked into the ER, and stayed there for a month before transferring to a hospital in California, where she finally received her diagnosis of Autoimmune Encephalitis.

Family of Young Man with Rare Autoimmune Disease Outraged Over Drug Price Hike

Will Schuller, from Overland Park, Kansas, was 18 when he began experiencing extreme weakness. An avid runner, he was pulled out of high school when he struggled to walk down the hall, and stopped being able to go up the stairs.

He was eventually diagnosed with Lambert-Eaton Myasthenic Syndrome (LEMS), a chronic autoimmune disorder than affects muscle strength. LEMS is reported among 3,000 people in the US, and can dramatically impact one’s quality of life.

Schuller was prescribed a drug called 3,4-DAP, which made him feel better instantly. The drug was free as a result of an FDA program called ‘compassionate use’. The drug’s manufacturing rights, however, were sold to a company called Catalyst, which renamed the drug Firdapse, and raised the price to $375,000/year for the medication.

Schuller’s family decried the extreme price hike, stating that if it hadn’t been for this medication, their son would certainly be in a wheelchair. Senator Bernie Sanders of Vermont called the price increase a ‘fleecing of American taxpayers’.

Schuller is now a senior studying mechanical engineering at the University of Tulsa. Read more about his story here.

Interested in reading more? See last week’s top news in autoimmunity here.

Top News in Autoimmunity – Week of Jan. 2, 2019

American Teacher in Thailand Paralyzed by Rare Autoimmune Disease

Caroline Bradner, a 22-year old recent graduate from the University of Mississippi, was left paralyzed after developing a rare autoimmune disease while teaching English at a Thai school.

She was diagnosed with an autoimmune condition called Guillain-Barré Syndrome (GBS) shortly before Christmas. Since then, she has been paralyzed from the neck downwards and is unable to move.

Her family reports that she has a long road to recovery ahead, and has even started a GoFundMe page to help with medical costs, including disability-related transportation, hospitalization, and rehabilitation fees, after Caroline’s insurance claims were denied. The fund has since surpassed its $70,000 goal.

Guillain-Barré syndrome affects 1 in 100,000 people each year, and its affects can be devastating. Read more about Caroline’s harrowing story here.

Scripps Researchers Find Molecular Cause of Autoimmune Disorders

Scientists at Scripps Research have found a molecular cause for a rare group of autoimmune disorders. Patrick Griffin, PhD, professor and co-chair of the Department of Molecular Medicine at Scripps Research, explains that the discovery has improved scientists’ understanding of the role of the interferon protein in the development of several autoimmune conditions. The autoimmune diseases included in the study were:

Singleton-Merten Syndrome (SMS)
Aicardi-Goutières Syndrome 
Familial Chilblain Lupus
Proteasome Associated Autoinflammatory Syndromes

The scientists demonstrated through their study how mistakes in the body’s molecular proofreading system can lead to out-of-control interferon protein signaling, thereby inducing the above autoimmune disorders.

Read more on the Science & Technology Research News website.