Today is Rare Disease Day and I started the day feeling like a fraud.
Kind of how I feel like a fraud when I have appointments at The Cancer Clinic. In the waiting room, I wonder if all the other patients know I don’t have cancer. Can they tell by my thick hair and rosy cheeks? Do they know I haven’t even tried chemotherapy? I feel sorry for myself sitting alone at The Cancer Clinic, yet I don’t even have cancer!
The truth is mast cell activation syndrome is likely not a rare disease. Some researchers believe more than 5% of people suffer from it! (In the U.S. a disease is considered rare if it affects less than 200,000 Americans.) MCAS is, however, rarely diagnosed for two reasons. First, it’s a newly recognized and very complex disease. It is the most confusing thing I’ve ever tried to learn. For reference, I’ve also tried to learn Chinese, tax increment financing, and Twitter.
Second, diagnosis often depends a cold piss relay race across the country. You have to collect 24 hours’ worth of your pee in your refrigerator, pack it in a cooler, and bring it to a lab. The lab then ships it across the country and you pray it stays cool the whole time. For reference, I can barely give a urine sample in the ER without spilling it on myself.
This year, I teetered back and forth about celebrating Rare Disease Day. I don’t want to be the woman who cried “rare” only to inform everyone that in fact naughty mast cells are lurking everywhere. Yet MCAS patients face the same obstacles any rare disease patient faces: lack of information; few experts; inadequate treatments; and little to no research funding. So where do we fit in?
It’s kind of like when the check-in nurse at The Cancer Clinic learns I have MCAS and insinuates that cancer would probably be easier. And then I have no idea how to feel.
The truth is they all suck: cancer, rare diseases, and MCAS.
Rare Disease Day raises awareness about patients’ lives and advocates for research funding for treatments and cures. MCAS taught me about Rare Disease Day, but I don’t need MCAS to celebrate it. I’ve decided, rare or not, I’m crashing this party (via the Internet (because my mast cells don’t like actual parties)).
Learn more about Rare Disease Day at http://www.rarediseaseday.org.