Look. I know I talk a lot about having a rare disease. It's important to me. But I've been noticing lately that a lot of people are telling me that 'rare' is kind of losing its meaning because the condition *they* have has people in the thousands. Just stop it. 1/?
I don't care, if you're going to be like that. So just stop it. I've been on this rare disease train officially for about a decade, and I'm still learning. BUT what I have is actually in the hundreds of known cases worldwide. 2/?
Perhaps 250-300 is the current tally. In the whole world. THAT is rare. We are literally outnumbered by Pokémon. How's that for crazy? 3/?
What's also crazy is getting different tweets (even in between the lines) that the disability community should throw out the word 'rare' because people with rare diseases are in the 1000s, so it doesn't matter anymore. 4/?
THAT'S JUST NOT TRUE. Not all rare diseases have known numbers by the thousands. We just don't. Some of us are actually in the few hundreds. 5/?
And because of that, we don't have that many opportunities as other people disease community do. ESPECIALLY where doctors are concerned. We fight very hard, and sometimes even HARDER that other disabled people because of lack of general knowledge. 6/?
We should be able to talk about who we are as the special few hundred that we are, condition by condition, without someone else telling us no just because the word 'rare' is becoming less meaningful. 7/?
Anyone who comes at me from now with 'rare' being relative or not having a real meaning anymore will be ignored or blocked. I. Am. Rare. 8/done
@threadreaderapp, please unroll
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