There is one thing I wish for: I would like to meet someone with ROHHAD over the age of 15! I want to talk to an adult with ROHHAD - I want to know what life it like after age 15. We can't find anyone over 15 and neither can our doctors. So what happens after that????????
After 45 years of a disease that has only claimed 50 or so kids --- you'd think you'd hear of one making it past 15 and at least a doctor could find out how they are living now.
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Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
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I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child...
That's the trouble with a rare disease... Who knows if people were even getting diagnosed with this illness 15-20 years ago. Haven and her friends are going to be the first kids to do it!!
ReplyDeleteDear Misty,
ReplyDeleteStill praying that a cure, treatments or whatever that is needed can be found so that Miss Haven and others can have a long healthy and productive life.
With caring prayers,
Wylene