My Daughter's Friend Died
We found out today that a 22 year old friend of my 19 year old daughter died on Thursday of complications of the same genetic disorder my daughter has. Lex had many of the same issues that my daughter does, and we were able to meet with her and her family several times. Lex was the first person my daughter ever met with Ehlers Danlos Syndrome and helped her figure out her symptoms when the doctors couldn't.
It is really hitting us hard. I guess we've known for a while that this could be fatal. We're pretty sure my brother also had EDS and he died in his sleep when he was 28. My daughter also has undifferentiated connective tissue disease and adrenal insufficiency - conditions her friend did not suffer from. It's all so scary, and so discouraging. She is virtually house bound with little hope of improvement.