Top News in Autoimmunity – Week of Dec. 5, 2018

Sjogren’s non-profit seeks applicants for research grants

The Sjogren’s Syndrome Foundation (SSF) is now accepting applications for research grants. Two distinct awards are being offered: the SSF Pilot Research Award for $25,000 and the SSF High Impact Research Award for $75,000. To view more details and apply, see the SSF website.

Trump administration proposes access barriers to drugs critical to autoimmune patients health

The American Autoimmune Related Diseases Association (AARDA) reports that the Trump administration has proposed a Medicare rule that allows for step therapy and prior authorization restrictions. The AARDA states that such a rule would interfere with the patient-physician relationship, and can result in delayed treatment, increased disease activity, loss of function, and potentially irreversible disease progression for Medicare beneficiaries. Read more here.

Sharing the Journey series provides tips on explaining lupus

The Lupus Foundation of America has published a blog series Sharing the Journey to highlight the perspectives and personal experiences of those who struggle with lupus each day. In the series’ latest installment, contributors describe how they explain lupus to family, friends, co-workers, and others. Read their compelling stories here.

MS Society of Canada launches Vitamin D recommendations for MS

The Multiple Sclerosis (MS) Society of Canada has released a report detailing Vitamin D recommendations for those living with MS for at-risk populations.

Vitamin D, dubbed the ‘sunshine vitamin’, is produced by our skin through sun exposure, but can also come from other sources such as food (eggs, fortified dairy products, and fish) and supplements. The Society has long funded research on the relationship between Vitamin D levels and MS. The recommendations have been summarized into two reports; one for researchers and healthcare professionals, and another for laypersons. Read more under the Society’s research news.

5 Celebrities with Autoimmune Diseases

Did you know that the following celebrities have autoimmune diseases? Unfortunately, being an A-lister does not exempt you from having health problems. Read on to learn about their powerful stories of hope and living with chronic illness.

1. Selena Gomez

Selena Gomez.jpg

In 2015, it was revealed that Selena Gomez suffered from Lupus, an autoimmune condition that causes the body to attack its own vital organs, skin, joints and other tissues. Selena also disclosed that she was undergoing chemotherapy as part of her treatment.

Her life took a dramatic turn in 2017, when her doctors advised that she would need a new kidney. Thankfully, her best friend, Francia Raisa, generously donated her own kidney to Selena, undergoing an intensive, 6-hour organ transplant surgery. Although the surgery seems to have had a positive impact on Selena’s physical well-being, she admits that Lupus has also taken a toll on her mental health, causing her to experience depression, panic attacks and anxiety. She has become an advocate for Lupus awareness, and was co-chair at the 2017 Lupus Research Alliance Gala.

2. Venus Williams

Venus Williams.jpg

Tennis all-star Venus Williams shocked the world in 2011 when she revealed that she had been diagnosed with an autoimmune condition called Sjogren’s Syndrome. Sjogren’s primarily affects the body’s moisture-producing glands, resulting in symptoms such as dry eyes and mouth, severe fatigue, and joint pain.

Venus attributes the disease to taking longer to recover from injury, and was forced to withdraw from the U.S. Open in 2011 due to her symptoms. However, she believes in a “never give up” mentality, and has adopted a vegan diet to improve her overall health. Venus also became an Honorary Chairperson for the Carroll Petrie Foundation Sjogren’s Awareness Ambassador Program to raise awareness about the disease.

3. Jack Osbourne

Jack Osbourne

Jack Osbourne, son of heavy-metal singer Ozzy Osbourne and reality TV personality Sharon Osbourne, was devastated to learn that he had been diagnosed with Relapsing-Remitting Multiple Sclerosis in 2012.

Multiple Sclerosis (MS) is an autoimmune disease of the nervous system, and can result in a diverse range of symptoms, from mobility and speech issues, to pain and even blindness. Jack revealed in an interview that he was diagnosed with MS after noticing a black dot in his vision, that turned out to be optic neuritis, an inflammation of the eye nerves that resulted in 90% blindness in his right eye. Despite the diagnosis, Jack is determined to live a fulfilling life, and has partnered with a neuroscience organization to create the international campaign “You Don’t Know Jack About MS” to raise awareness about the disease.

4. Wendy Williams

Wendy Williams

Wendy Williams shocked viewers when she fainted on live TV during an airing of her daytime talk show, Wendy. When she returned after a three-week, doctor-ordered hiatus, Wendy revealed that she had been diagnosed 19 years prior with Grave’s Disease, which may have contributed to her fall.

Grave’s Disease is an autoimmune condition that affects the thyroid gland. Symptoms are varied, but may include hyperthyroidism (overactive thyroid), bulging of the eyes, heart palpitations, weight loss, and fatigue. During a segment with Dr. Oz, she discussed her struggle with the condition, and has used her platform to raise awareness for the disease.

5. Winnie Harlow

Winnie Harlow

24-year old model Winnie Harlow rose to fame at a young age as a contestant on Tyra Banks’ reality TV show, America’s Next Top Model. The Canadian model revealed that growing up, she had been a victim of vicious bullying due to having a chronic autoimmune skin condition called Vitiligo, which causes the destruction of melanocytes, resulting in a depigmentation of the skin.

Winnie did not allow her autoimmune condition to stop her modelling career, however, and has modeled for international brands such as Desigual and Swarovski. She has become an outspoken advocate for self-love, presenting a TedxTalk on the topic and participating in Dove’s Real Beauty campaign.

My struggle with autoimmunity: Part 2 (Diagnosis)

This is a continuation from my last post.

When I met with the family doctor, I described the myriad of symptoms that had been plaguing me for the last six months— from my barren-dry eyes and mouth, to my ongoing fatigue and newly-occurring joint pain.

Describing all of the health issues I had been going through, I expected the doctor to be horrified by my symptoms. But instead, his reaction turned out to be completely blasé. For instance, when I recounted how the joint pain in my fingers was so excruciating, I could barely hold a pencil (let alone write my final exams), he countered, “Maybe you’ve been texting too much?” with a definite eye roll.

Despite his skepticism that I was truly sick and in pain, I must have looked frazzled enough, since he recommended that I take a blood test.

When my blood work came back from the lab, I received a phone call from the family doctor’s office stating that I needed to come back in. That’s when I began to worry; as they say, ‘no news is good news’. So the fact that they had something to tell me made me wonder what was up.

When I saw the family doctor again, he had a very serious composure. He wouldn’t tell me what was wrong, he just explained that he was referring me to a rheumatologist, and that this specialist would review my blood test results in detail with me.

A rheumatologist? I thought. But isn’t that for old people? 

I had to wait several months to see the specialist; unfortunately, the Canadian healthcare system didn’t take into account the severity of my symptoms— I just had to get in line and wait.

My mother insisted on attending the rheumatology appointment with me. By this time, I had turned 20 and was run down by the ongoing health issues I was experiencing while trying to balance my hectic school schedule. The one thing that kept me going was this feeling that it would all be resolved soon.

During the appointment, the rheumatologist explained that I had had a positive ANA result. ANA stood for antinuclear antibodies, and it meant that my immune system was attacking itself. He went on to explain that this meant I had an autoimmune disease, and asked me if I had any family history of autoimmunity. This being the first time I had ever heard of the term ‘autoimmune disease’, I told him no.

The problem, my doctor explained, was he could not tell from my lab results exactly which autoimmune disease I had. From reviewing my symptoms, it sounded like I had a condition called Sjögren’s Syndrome, but my ethnicity and age fit the profile of someone with Lupus. He went on to describe even more serious diseases that I could have; by the time he got to Lymphoma, I was almost in tears.

I would have to undergo a series of medical tests in order to figure out what autoimmune condition I really had. As a result, the rheumatologist was referring me to an ophthalmologist and an ear-nose-throat (ENT) specialist.

I waited another number of months for my follow-up appointments with these specialists. The ophthalmologist conducted a Schirmer-Rose Bengal test on me, which involved inserting small slits of paper between my eyeballs and my eyelids to measure moisture levels, then putting colored eye drops into my eyes to dye the dry spots, so they could be easily identified.

The end result? My eyes were Sahara Desert dry!

The ENT specialist, for his part, took a look at my ears, nose and mouth. Not only had I had an oral yeast infection and dental caries, but I was getting recurrent infections, such as bronchitis and tonsillitis. I also had a salivary gland blow up to the size of a small apple.

The results were sent back to my rheumatologist. Despite not showing a positive result for SSA or SSB antibodies in my blood test, which would have resulted in an immediate diagnosis, the results of my other examinations confirmed that I had Sjögren’s Syndrome.