Float Like a Buttahfly: April is SAM!

Living with a chronic illness is never easy – it can rob you of your abilities, your independence, your sense of self … not to mention the pain and other physical symptoms. When your illness is cancer, MS, or another well-known condition, it usually brings with it sympathy and support from those around you: most people have heard of these diseases, and have at least a basic understanding – they know these are serious, and want to be there for you. When it’s sarcoidosis, however, that last part is often lacking.

With sarcoidosis (and many other rare/less well-known diseases), there’s not a fast and direct line from symptom to diagnosis. It can take years of doctors, tests, and misdiagnoses before the right one is discovered, and even longer before a helpful treatment plan is worked out. During that time, the symptoms get worse, but the understanding and sympathy from those around us often fades.

To an extent, some of that is almost understandable. We seem to drag on, often looking well though we say we feel awful, unable to answer the most basic questions, like “what’s wrong with you?” Our symptoms change from day to day, and often mimic or overlap with other conditions. We call out sick from work, cancel social plans, avoid chores … and no one really knows why.

That’s why Sarcoidosis Awareness Month (SAM) is so important. It gives us the opportunity to answer some of those questions, to help those around us to understand what we’re going through, and to help others living with sarcoidosis to know that they’re not alone. It gives us a chance to say the word, put a face to it, and to build a community of patients and supporters who are in this together.

The first question to answer, of course, is What is sarcoidosis? I’ll let the Foundation for Sarcoidosis Research answer that:

Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas, tiny clumps of inflammatory cells, in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is permanent thickening or scarring of organ tissue.

Though only about 200,000 people in the US have this disease, it can affect anyone from any population at any time. It can also affect any organ in the body. Personally, I started developing symptoms in my 30s, and was finally diagnosed with sarcoidosis at 40. The inflammation causes pain and swelling (arthritis) in all of my joints, and the granulomas have formed in my lungs (hilar adenopathy) and skin (erythema nodosum). I also experience systemic (whole body) symptoms, like fatigue, fevers, and chills. With treatment that includes 17 pills/day, 3 injections/week, and a number of complementary/alternative therapies, I am still in pain every day. I can’t walk more than a few steps without assistance (cane for short distances, scooter for longer ones), and I’m not able to work anymore.

What I can do, though, is use my voice to make a difference. To that end, I was excited and proud to become a Patient Ambassador with the Foundation for Sarcoidosis Research. Together with the other Ambassadors and FSR staff, we aim to empower patients, facilitate grassroots outreach, advocate on the local and national level, support FSR programs, and facilitate fundraising for sarcoidosis research. We’re working on a number of endeavors for Sarcoidosis Awareness Month, and we’d love to have your support!

Proclaim It! – We’re making every effort to get the month of April officially recognized as Sarcoidosis Awareness Month, both state-by-state and nationally. See where your state stands, and help us #PaintTheMapPurple
Watch This! – FSR staff and volunteers will be at the TODAY Show on April 4^th and Good Morning America on April 5^th. It’s an opportunity to raise awareness, and let patients at home see that they are not alone. Join us in person or watch on TV as we #PaintThePlazaPurple!
K.I.S.S. – Kick In to Stop Sarcoidosis at one of these patient-led walkathons. Find an event near you (I’ll be at this one!), or become a virtual walker in your own way.

Beyond these activities, there is one other thing anyone can do to support someone who is living with Sarcoidosis. Earlier, I indicated that it is almost understandable when sympathy fades as this disease progresses. The thing is, it’s really not. Whether you understand the etiology and development of the diagnosis or not, what any person needs – and deserves – is to be heard, not judged. So if you know someone who is struggling with this disease (or any other), the best thing you can do is be there. Offer a sympathetic ear: really listen, and genuinely believe what we say.

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