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.

April is Sjögren’s Awareness Month

Raise Awareness About Sjögren’s Syndrome by Sharing Your Story

April is Sjögren’s Syndrome awareness month! To raise awareness about this autoimmune disease, the Sjögren’s Syndrome Foundation (SSF) will be posting a daily story about someone affected by the disease on their social media platforms with the hashtag #ThisisSjogren’s. To participate in the campaign, fill out and submit the questionnaire at the following link along with a photo: https://info.sjogrens.org/conquering-sjogrens.

Here’s my questionnaire:

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Name: Isabel

Current age: 26

Age when diagnosed: 20

City/State: San Diego, California

How would you describe yourself in one word (teacher, graphic designer, stay at home parent): Marketing Coordinator

What are your top three most difficult symptoms to live with: Eye/mouth dryness, joint pain, fatigue

What is your most difficult symptom that people don’t understand: Brain fog – it’s an invisible symptom, and it’s hard to explain

What do you wish people knew about your Sjögren’s: 

That the condition involves the whole body, and it’s more than just eye and mouth dryness (and even those can be destructive symptoms).

What’s your best Sjögren’s tip:
Find a positive outlet in which you can discuss your disease – whether that’s a support group, talking with a loved one or keeping a journal. I write about Sjögren’s on my blog, autoimmunewarrior.org, and use it to connect with others who have the disease.

When your doctor doesn’t believe you

Have you ever complained to your family physician about your symptoms, only to be totally dismissed?

Whether you’ve been diagnosed with an autoimmune disease or not, your ailments may be ignored or written off as ‘not a big deal’ by a health care professional.

This has often happened to me over the course of the last 7+ years of having an autoimmune condition. For example, before I was even diagnosed with Sjögren’s Syndrome, I was told that my symptoms, including joint pain, eye and mouth dryness, recurrent ulcers, yeast infections, and fatigue had a plausible, non-disease related cause, and weren’t really a ‘big deal’ anyway.

Even worse, other health care professionals told me my symptoms were nothing more than a figment of my imagination.

Worse yet, after many unproductive visits to doctors’ offices and labs, with little to no explanation for what could be wrong, I actually started to believe…could I be imagining this?

One family MD, for example, told me my joint pain was probably a result of ‘texting too much’. As a fresh-faced teenager, I probably didn’t look like someone who could be experiencing debilitating joint pain. But that shouldn’t matter. In fact, juvenile rheumatoid arthritis, affecting those 16 years and younger, affects over 50,000 people in the United States alone.

Another time, I needed a referral to see a rheumatologist. The nurse who checked me in asked, “How does someone your age need a rheumatologist? Did you wear high heels too much in high school?” Not only was her questioning intrusive, rude, and uncalled for, it invalidated my experience as a patient with a chronic health condition.

As a result, I became even more reticent to explain my health issues with the people who I should be speaking with the most…health care professionals! And sadly, this is too often the experience for others living with autoimmune or other chronic health conditions.

The Sjgoren’s Syndrome Foundation recently shared a tip on social media, stating, “Remember that just because a symptom can’t be seen easily, it is still important. If you feel that a physician dismisses your Sjögren’s symptoms, help educate them and/or find another physician”. Many commenters responded by lamenting their own experiences with not being taken seriously by their healthcare providers. One woman commented, “My dentist keeps telling me to stop making excuses for my bad teeth”, referring to the fact that Sjögren’s often has a devastating impact on patients’ teeth, despite maintaining a solid oral hygiene routine.

If I had to give one piece of advice for anyone with chronic health problems, diagnosed or not, I would say to never give up. If your physician doesn’t take you seriously, move on. This doesn’t mean that you don’t listen to your doctor’s medical advice; this means that if they tell you it’s ‘all in your head’, or ‘it can’t be that bad, can it?’, and you know they are wrong, then you stand your ground.

Remember, you are the best advocate for your own health! Check out these helpful tips published by WebMD about talking to your doctor.