It seems like about every two weeks I find another ROHHAD family. This time there are 2 new ones. They found my site I created on facebook for ROHHAD Syndrome and I was able to check her web site.
CLICK HERE for Twin Cin-City -- her child is currently with Dr. Weese-Mayer
The other lady's name is Trina - from Newfoundland.
I don't know much about them - I have only recently found them. But it's great to finally have a place where all of us can connect!!!!
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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...
And this is suppossed to be rare. I find a lot more rare diseases are popping up everywhere!
ReplyDeleteConsidering there is ONLY 50 kids in the entire world so far documented as having this disease it is extremely rare. NORD and GARD consider "rare" to be 100,000 or less.
ReplyDeleteSomehow I have been able to meet about 10 families confirmed to have ROHHAD of the 50 known. It's pretty awesome.
Neuroblastoma takes 650 new children a year. ROHHAD has had 50 children since first diagnosed in 1998.
My son Luca has recently been diagnosed with ROHHAD in August 2009. We are continually back and forth to hospital and when I get time I will setup a website/blog so everyone else can find out more about Luca.
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