The first time I heard it, I didn't really know what it meant. VHL, Von Hippel-Lindau...sounds foreign, sounds strange, sounds scary. Especially when it's something you have.
This is VHL in a nutshell:
Von Hippel-Lindau (VHL) is a genetic condition involving the abnormal growth of blood vessels in some parts of the body which are particularly rich in blood vessels. It is caused by a flaw in one gene, the VHL gene, on the short arm of chromosome 3, which regulates cell growth.
There is more to it...but we'll get into that a little later.
My mother found out she had VHL when she was 25 years old. It was 1964. She had been married about 9 years and had 3 small children.
I remember my dad taking me out onto the front porch and saying: "Susie, your mom is losing her sight. You're going to have to be a big girl and help out more. Ok, get ready, mom is driving you to school". What?
I didn't know she had one good eye left. Depth perception was an issue...on our way to school, she hit the curb and I thought we were all gonna die. She didn't drive very long after that.
In 1964, we didn't know that much about VHL. My family was told it was an eye disease. Get your eyes checked every two years and if you don't have it by the time you are 20 yrs old, chances are you won't get it.
Well...VHL isn't something you "get". You either have it or you don't. You can't catch it like a flu.
So we all got our eyes checked every two years.
I am not a doctor or an expert by any means. Please visit VHL Family Alliance website for more information. http://www.vhl.org/
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