Finding Comfort in the Rare Disease Community

🦋 Kerry Wong avatar

by 🦋 Kerry Wong |

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Before I was diagnosed with sarcoidosis, I’d never heard of this disease. No one I knew had heard of it, either, except, as my mom insists, in the differential diagnosis on the TV procedural “House, M.D.” Even then, it was never the answer. No one actually had sarcoidosis.

After I was diagnosed with the disease, I wanted to learn all I could about it. One of the first things I learned was that it’s considered rare. (In the U.S., a rare disease is one that affects fewer than 200,000 people.) It made sense that no one had heard of it, since such a small percentage of people live with the diagnosis.

I wanted — no, I needed — to connect with other people with sarcoidosis (“sarcoidosis warriors,” as they often called themselves) and to do whatever I could to support them. That led me to get involved with sarcoidosis-specific organizations and events and with others dedicated to all 7,000 rare diseases. We have advocated together, walked and rolled together (I named my fundraiser events Walk ‘n’ Roll, to include wheelchair, scooter, and rollator users), and been there for one another as the rare people who really “get” what we’re going through.

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Last year, I discovered #Dazzle4Rare, an annual campaign designed to encourage advocates and groups for specific rare diseases to share posts from one another, thereby increasing the audience for each of us. It also gave me a chance to (virtually) meet people with other rare diseases. Even with different diagnoses, so much of our experience is relatable.

Many people with rare diseases have a long and difficult road to diagnosis; it took eight years and countless doctors for me. Because they’re so rare, these diagnoses aren’t usually at the forefront of our doctors’ minds. In many cases, doctors have had barely a mention of our diseases in all their years of study and practice, so they don’t know how to connect the dots for us.

There’s a saying, “When you hear hoofbeats, think horses, not zebras.” The idea is that we should look for the simplest explanation. When it comes to rare diseases, though, those simple explanations don’t quite fit. Our doctors need to keep thinking, researching, and consulting other specialists until they realize that for us, those dots connect to form zebra stripes. That’s why the zebra has become a symbol of rare diseases and rare disease warriors.

Without a diagnosis, our physical symptoms are blanketed with frustration. They can seem even worse when we don’t know what’s causing them. We may be gaslit by our doctors, who refuse to admit that they don’t have the answers. When we don’t have a name for our disease, we’re often seen as melodramatic or hypochondriacs rather than legitimately, honestly sick people.

Even with a diagnosis, if it’s not one they’re familiar with, people in our lives often don’t take it as seriously. I’ve lost count of the times I’ve heard “at least it’s not cancer,” as though that’s the only significant health condition. Friends, family members, and co-workers can be less sympathetic when they don’t understand, making all aspects of our lives even more difficult. That’s why we zebras need one another even more.

A few years ago, I discovered Sarcoidosis News as a great source of information and patient perspectives. When I was invited to begin my own column last year, I learned more about its parent company, BioNews. I learned that it hosts sites like this one for other rare diseases, including many I’d never heard of before. Since then, I’ve gotten to know some other rare disease writers through their columns, and we’ve connected over our shared experiences.

Living with any chronic illness can be isolating, but it’s much more so when it’s a rare disease that no one understands. That’s why it’s vital to find “our people,” whether in person or online. When we find each other, there’s an instant bond: We skip over acquaintance and friendship and become family almost instantly.

Each of these rare diseases forms its own family, and these groups are so necessary for our mental and emotional well-being. When these families join together, they become the rare disease community. This community is understanding, empathetic, fun, supportive, active, and protective of its members. Though naturally, I wish I still had my healthy and vibrant body, I’m both proud and grateful to be a part of this community.


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.

Comments

Kathy Acanfora avatar

Kathy Acanfora

I was diagnosed with pulmonary sarcoid in 2005. Has since travelled to my brain.... diagnosed neuro sarcoid. Had surgery for hydrocephalus. My balance is SEVERELY affected. No dr's know how to help. Very depressing to live with this every day. I appreciate your article. I'm sorry for anyone who has this, but I need to learn, too. I probably know more than some of my doctors do.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Kathy, I'll agree with you there - quite often we do know more about this disease than the doctors we see. That's why it's so important to stay connected with the community - other sarc warriors can often offer guidance based on their experiences ... and though that shouldn't be taken as medical advice, it can sometimes help us find better providers, or give us suggestions to ask our providers about. Wishing you luck!
~🦋

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Colin Richman avatar

Colin Richman

Thanks for the site,
Is there specifically a cardiac sarcoid community?
If not could we start and create such a community?
Colin RIchman DMD

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🦋 Kerry Wong avatar

🦋 Kerry Wong

Colin - I'm not familiar with a specific cardiac sarc group, but I'm sure there is one. There are so many groups on Facebook. You could try entering "cardiac sarcoidosis" in the search and see what comes up. You could also pose the question in the more general sarcoidosis groups, and you may be able to find it that way ... and if not, you could definitely start one and generate interest that way, too. You can do the same via the sarcoidosis community on Inspire, too (https://www.inspire.com/groups/stop-sarcoidosis/).
~🦋

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Diane Sutherland avatar

Diane Sutherland

Hi Kathy. I recently was diagnosed with sarcoidosis. I have had balance issues for quite sometime now. How did they find that it has gone to your brain? How will this effect you as this disease continues? I am clueless. Thank you for your help.

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Elizabeth Van Renen avatar

Elizabeth Van Renen

Hi, Iwas diagnosed in 2008. getting x rays to immagrate to Australia from South Africe. Than in 2018 it affected my heart. got an implatable defibrillator. working like a charm keeping me alive.
Few aches and pains but still going. I believe in Jesus who give me peace in my travels.

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🦋 Kerry Wong avatar

🦋 Kerry Wong

So glad to see you're going strong, Elizabeth! Thanks for sharing your story here.
🦋

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