Story about Von Hippel-Lindau Disease .

My vhl story

May 16, 2017


My vhl experience begins around 12 yrs old. I woke up one day and was having blurry vision in my left eye. My mother took me to the eye doctor who sent me to a specialist. This Dr was fresh out of med school and I was one of his first patiants. He looked in my eye and noticed a unusual cyst, a tiny spot that was feeding off my blood vessels and pushing against my retina causing it to detach. He remembered studying vhl in college. He asked us to bring in a family tree. Sure enough other family members on moms side  had passed away from the symptoms of this disease. But they never knew, it was undiagnosed. Since than my mother had kidney tumours removed, brain tumours, and spinal tumors. Her brother has had kidney tumors, 3 brain tumors removed and spinal involvement. He is in his late 60's. He is the longest living vhl family member as of now. I had my left kidney removed and part of my right kidney removed 25 years ago. Since than I have had my right kidney removed last year, dialysis for 1 year kidney transplant 5 months ago.I have a prostetic left eye and cant see out of the bottom half of my right eye. I have cysts on my brain but never had surgery yet, no symptoms. I have two grown up children, one who got the vhl gene. No symptoms for him yet.I have missed 3 months of work each of the last three years because of kidney and eye issues. Have not been able to drive for three years now because of sight issues. I work as a chef for a large food service company which keeps me very busy. I try to keep my chin up and take one day at a time.

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