Sarcoidosis is one of the rare diseases that makes me angry.
A good friend of mine has it and it has rendered a once vibrant, active woman into one who hates to leave her house because she doesn’t know if she’ll be swamped with fatigue or overcome with pain.
Sarcoids are clumps of granulomas that collect in the lungs, eyes, and other organs, taking away the ability to breathe well, and/or causing blurry vision.
My friend was diagnosed in her 20’s. She had been experiencing shortness of breath, despite the fact that she has never smoked one cigarette in her life. And then her joints swelled and a rash formed on her arms and legs.
At first, her doctor thought she was having an allergic reaction, but after she answered all the usual questions, tests were performed that revealed the cause behind her suffering: Sarcoidosis.
Why? That’s the question we all ask when a rare disease strikes. As my friend would reply, “Why not?”
Sarcoidosis occurs more frequently in people of African or Afro-Caribbean heritage, and the prevalence is higher among the Irish, Germans, and Scandinavians.
My friend is Irish/German with an African-American father.
I’d like to think she wasn’t just a sitting duck waiting for the sarcoidosis bus to pick her up, but she definitely fits the profile.
The treatments usually involve steroids, which for those of us who have experience with that class of drugs, creates an entirely separate host of challenges. But for now, that’s what my friend is doing.
And me? I’m raising awareness about sarcoidosis so that treatment options will improve and a cure can be found.
