Discover and read the best of Twitter Threads about #CallMeLivingProof

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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/?
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