Today is Rare Disease Day and this week marks five years since I first heard about Joubert syndrome. So to honour both, I'm taking this week to write about five things I've learnt in five years with JS.
1. It's a very small world
Thanks mostly to the Internet and Facebook, I've learnt that the world becomes incredibly small when you have a rare disorder. It's such a cool thing to be able to look up photos, videos, and articles about Joubert syndrome and instantly know, or at least recognize, the people in them!
Medically speaking, I've now got people looking out for me all over North America. My geneticist here in Ottawa, specialists from the conferences in Seattle and D.C. I've even got doctors in Boston and Montreal looking for my gene.
Personally, I've got friends from all over the world! The first adult with Joubert I met was from Sweden, and I've since met others from Wales, Holland, and even Australia. For my 29th birthday, a year after attending the Joubert conference in Minneapolis, I received birthday greetings from people as far away as Malaysia!
It's so great to be part of such a small, worldwide community, and I'm excited to see it keep on growing.
Cheers!
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