hi eveone
My daughter and i are going to the nih on feb. 20 for the first
time. We are looking foword to going back. Maybe i can meet sone of
you guys that have the same thing.i went 27 years not knowing what i
had and thanking that i was the only one that had this rash. I also
went25 years thinking i had tumers on my optic nerves. Know i know
why i can't see good and why i can't here good to. Ihave been in and
out of the hospikal when i was my daughter age and i gope she goesn'
ger what i got when i was in the hospidal. I know sge has nomid like
me so the doctors are trying to stop her opticnerves from swelling
and from going blind like me and so she doesn't lose her hereing like
me to. your friend
becky