Let’s Raise Our Voices for Sarcoidosis on Rare Disease Day

When I stumbled upon sarcoidosis in 2002, I was told it was rare for it to cause chronic health issues. What I wasn’t told was that the disease was rare. I haven’t come face to face with a single person with sarcoidosis since my diagnosis. Nor have I met in person anyone outside of a physician’s office who understands it.

From student to teacher

After getting over the initial shock of my diagnosis, I had to tell others about it. Like then, revealing my sarcoidosis still means having to explain what it is and how to pronounce it. And finding others who share and understand my sarcoidosis-related health issues means going online. But thanks to increased efforts to raise awareness, I now have the option of traveling to patient conferences and other events. 

A difficult journey

The path of sarcoidosis is unpredictable. One of my biggest challenges is finding physicians familiar with treating it and persevering past those who have blamed various symptoms on depression. When a doctor retires, I have to begin my search all over again.

Awareness is growing

Last year, NBC teamed with the Foundation for Sarcoidosis Research to broadcast public service announcements during Sarcoidosis Awareness Month. Sarcoidosis even made it into some episodes of the television series “House,” when the disease was tossed around by a fictional team of doctors as a possible solution to a medical mystery. Awareness is improving, but we have a long way to go.

More needs to be done

Too many still suffer for years (or a lifetime) of symptoms without knowing they have sarcoidosis because it is difficult to diagnose. And cardiac sarcoidosis is going largely undiagnosed until autopsy, leading to the devastating loss of loved ones without warning.

Our voices are powerful

We are rare. Each of our experiences and journeys with sarcoidosis is different. I hope that our voices can help to pave the way for improved diagnosis and treatment.

Feb. 29 is Rare Disease Day. Join the Bionews Services social media campaign by sharing your story using the hashtag #whatmakesmerare. Share your battles and your frustrations. Share your hope. Share that you are a sarcoidosis warrior. There is strength in numbers. On Feb. 29, let’s make sure we are heard.

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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to sarcoidosis.