Izzy/Kitten and I made a vlog about what it was like getting diagnosed with a poorly understood genetic condition.
The links to all of Izzy's online stuff are posted at the end of the video--yes I know she is adorable. And yes my eyebrows are crazy. It was very very hot that day you can see me turn pinker and pinker.
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fabrizia:
OMG you are so cute! I love your eyebrows. On a serious note though, this was very informative and I think you probably helped a lot of people understand what it is like to have a rare or uncommon illness. Hope you're doing ok! I'm going through some uexplained problems and I am having to go to specialists, who are doing the same thing to me--no one knows anything! I have come to the conclusion that most doctors are smug condescending jerks. Augh.. it's very frustrating.
puffin:
You're a real life anime character. You're so awesome!