Trying To Get To Know Other People With Vhl

hi im laurie i have von hippel lindau syndrome, i had my first experience at 12 when i found out i had 3 tumours on my spinal cord, after my operation i had 2 tumours and a cyst, at the age of 18 i was rushed to hospital with pain in my head where they found i had 2 cysts at the back of my neck causing preasure in my head where the cf fluid was gathering, it was a fw month later wen i was contacted by a genetic doctor nicola bradshaw she tested me for vhl and i have the gene although no one in my family have it, since then ive had cysts removed from my kidney head twice kidney and spine,
laurie88 laurie88
22-25, F
1 Response Jan 8, 2013

I am looking for people who have VHL. Difficult or I am searching in the wrong places. Hope all is going ok with you and that you are keeping strong.