Rhizomelic Chondrodysplasia Punctata or The Conradi–Hünermann–Happle syndrome

November 23, 2008

Hello i hope all on here are well tonight. I was wondering if any1

of you have had experiance with either 1 of these disorders. I was

dianised with the first disorder its 2 long 2 type it but anyway. I

was always plauged and so is my mother at the thought that I would

or will die early because of this. When I was dianosed there was

little research done and the internet was not accesable to many yet.

The thing is that i do not have all the symtoms of this disease and

am 22. Although the similaries are very close i have them all except

my brain function is normal and i have lived thru my teens. I came

across another disease that also fits the bill as well. I have not

been 2 a primary doc in a while and so i dont have 1 2 discuss this

with and i was wondering if som1 with this disorder could help me. I

seem 2 fit the latter disorder better but am unsure because when i

shocked at how i looked like the picture as a baby and the

statment " There is no cure for RCP. All children with RCP will die,

usually before they reach their teens " that sent chills up my spine

and if heathers mom is a subscriber 2 this group I am very sorry for

your loss she is beautiful. If any1 has first hand info i would

really love it. Thank you

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