At three weeks old I knew something was wrong. I told doctors (many) and nobody listened to the sleep deprived and perhaps paranoid mother. At… Continue reading 1 in 7.4 Billion
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I used to be a wierd boy with a wierd appearance: I was (and I still am) fat and loop-eared. Other boys didn’t invite me to their… Continue reading Puberty? I’ve never heard about it. My life with Kallman syndrome.
Sibylle’s Story My story started while I was vacationing in Thailand. I was 26 years old and it was my first trip all alone. Peter,… Continue reading The trip that changed everything
Imagine a brick building built with mortar that never dries. Walls move, buckle, and eventually collapse. Now imagine a complex human body with a similar… Continue reading Mortar that never dries – EDS-h
I was born with a rare congenital disease that baffled every doctor my parents took me to. It took until I was 14 years old… Continue reading Living with CLOVES Syndrome
I was the first in the family diagnosed correctly with HSP at age of 12 but showed signs at 5 my maternal grandmother was told… Continue reading Shining with HSP
 Caleb Champagne On the morning of October 27, 2016 we were scheduled to welcome our second child into the world. What was a routine… Continue reading Caleb Champagne
My daughter is 14. We’ve always known her to be very intelligent, sensitive and mature in many ways. What we didn’t know was the disorder waiting… Continue reading Misophonia
Why I’m Not a Hero  From what I’ve read, it seems the biggest thing people take away from their rare disease, is the new… Continue reading Why I’m Not A Hero