The Importance of Finding Your Sarcoidosis Community

The last few weeks have been an excellent reminder of just how important and vital community can be, especially when you have a rare disease.

Last weekend, the Foundation for Sarcoidosis Research (FSR) hosted its Global Virtual Patient Summit. FSR does a great job of bringing the sarcoidosis community together, and this event was no different. I had the pleasure of participating in a plenary session called “Life Hacks: Unveiling Your Best Life With Sarcoidosis.” As readers of my column might imagine, my love of running, even when it’s a challenge, was a discussion topic.

On Monday, the Johns Hopkins Sarcoidosis Clinic held a monthly patient support meeting. While the discussions are confidential, they are a great opportunity for us patients to hear directly from our healthcare providers, while interacting with and supporting one another.

Heck, even last week, BioNews, the parent company of Sarcoidosis News, hosted a virtual columnists meeting where we could chat with fellow writers.

All of these opportunities to connect with the sarcoidosis community are truly important for self-care.

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I’m blessed to have exceptional healthcare, via Johns Hopkins in Maryland and Mount Sinai here in New York, good health insurance, the privilege and resources to access treatments that insurance won’t cover, and extremely supportive loved ones, family, and friends.

Yet even with such a strong support system, I value the relationships I have with the sarcoidosis community. They are the people who truly understand the odd roller coaster of this condition. There is a unique connection there, and I admittedly forgot how important that can be — until last weekend.

Community helps remind me that someone can live 43 years with sarcoidosis and maintain a positive attitude. I’ve “only” had sarcoidosis for eight or nine years, so meeting that person gave me some perspective. She truly helped me define — or redefine — what normal looks like with sarcoidosis.

Community helps remind me that even when you’ve read countless articles and dry medical journals about your condition, there’s still so much to learn. Both the Hopkins monthly meeting and the FSR conference had world-class healthcare providers who presented the latest sarcoidosis news, including updates on treatment and clinical trials. I learned a lot that will help me to better manage my condition.

Community helps remind me that someone who still doesn’t consider himself a writer (yes, I mean me) can find ways to connect with strangers. Recently, many folks have mentioned that my column helps give voice to their thoughts and feelings. Now, I don’t say that at all to shine a spotlight on myself; rather, I was just so honored to hear that my words have resonated.

But most importantly, community reminds me that I’m not alone.

I’m well aware that I’m blessed with my loved ones, healthcare providers, and privilege. That is quite a lot to be thankful for. Yet I don’t typically see other sarcoidosis fighters unless I’m at the doctor’s office. Recent events allowed me to connect with them, without any medical tests afterward.

A few friends lovingly joke with me about all the groups I’ve joined, including the FSR Patient Advisory Committee, the FSR ACTe Now Committee, and even the audit committee for the American Lung Association (which also supports the sarcoidosis community).

But serving others leads to a fulfilling life, and I figure those of us with the ability to help should do so, however we can. So I’ll take the good-natured jokes.

I hope to always support my community in some way. Even though my rare disease can be oddly lonely, none of us has to be alone.

Please find your community, wherever it is. We’re here for you.

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, and are intended to spark discussion about issues pertaining to sarcoidosis.