Thread by @ThisIsJordanKay

Starting my third (!!!) hashtag. This one is called #CallMeLivingProof. My aim here is to talk about how there are people with rare diseases where the known cases are in the hundreds or less. And I want to talk about how the zebra term applies to ALL rare people. 1/?

Rare ≠ fading. There are those of us who don’t fit it in wholly in the disability community BECAUSE of how little is known about what conditions we have. I’m one of the eldest IN THE WORLD out of a few hundred known people. There’s a reason I said my rare disease isn’t EDS. 2/?

Most of the people who have Macrocephaly Capillary Malformation syndrome are kids. And/or nonverbal adults. This illness also takes patients often in their CHILDHOOD. I can’t tell you how sad that is. Or how sad it is to see people I love suffer. 3/?

I escaped most of the more terrible parts of this syndrome, but I live with just about everything else. There is no cure. There is no real treatment for me because I’m nowhere severe as the rest. 4/?

But people keep telling me that rare is losing its meaning because there are so many rare diseases where a lot of things are known. The word keeps getting tossed around like it’s nothing. 5/?

It’s true. It is happening. But I’m not going to let the word get dismissed on the whole because it’s the only real place in the rare disease community that the rarer zebras like me exist. 6/?

How dare people try to take that away! All of us are trying to find some people to exist. Why would you erase a safe space? You have yours. Why can’t we have ours? Don’t erase the rest us zebras. Or have we never mattered? 7/?

You tell me. Other extra rare people like myself are valid. We won’t be erased. We’re still here. No one can take that from us. Or tell us that the word is losing its meaning. I find that offensive. My goal is to take the word back. 8/?

And from what I’ve observed since becoming aware of the zebra symbol, it applies to all rare people. The zebra is for sharing. Even us ultra rare people. Is that so wrong? If we remember that and embrace it, then nobody would be left out. That’s another goal to work on. 9/?

I am here. We are here. I am real. We are real. I am valid. We are valid. I matter. We matter. I am not invisible. We are not invisible. I am rare. We are rare. 10/?

So #CallMeLivingProof that extra ultra rare zebras do exist 🦓 11/done

@threadreaderapp, please unroll