Do you remember the Hatfield-McCoy Feud caused by Von Hippel-Lindau

I saw something on this the other day, funny how it seems to still be a myth.

Anyway I wanted to do a different post because I wanted to talk about me!

I've been using Facebook forum on VHL a bit too much and I wondered if I should, my family are connected to that and then I remembered I could express myself here and not worry but hope - I don't know why - that some people will read it.

I was having a drink with a friends last night and we were talking about lots of things but VHL came up and she said she never thinks of it when she thinks of me. I was really pleased. I hate the idea that all I am is my genetic disorder.

I am not.

I bloody hate it all the same. I feel like a time bomb.

When will I next need surgery and when will it happen?

GRRRRRRRRRRRRR

Von Hippel Lindau is horrible.

Hatfield-McCoy Feud caused by Von Hippel-Lindau - my arse

There has been coverage of this story for a few days now. I'm really surprised by the number pf people who are interested in the story. I don't know why but it annoyed me. I think because I don't want this disease labelled a 'rage disease' I mean, really!

So I’ve commented on a few blogs about it. I saw on one that the VHL alliance have done there bit too see this

Good Old Joyce said “VHL does not cause rage, or even hormonal issues. It may lead to one of six different kinds of tumours, only one of which causes hormonal issues. A "pheo", a tumour of the adrenal gland, can cause surges of adrenaline, that fight-or-flight response that when you need it is great. It gives you extra speed and strength in an emergency. But injected into your body at random intervals, it can feel like a panic attack or palpitations. Very rarely is it interpreted as rage.

Might it have been a factor in the feud? Possibly. But don't forget that the Hatfields do not get pheos and they participated just as wholeheartedly in the feuding. There's a very strong component of culture and environment operating here in addition to the undiagnosed medical issue.

Having a medical problem is NOT an excuse for bad behavior. Everyone occasionally has bad days, or feelings of rage. Fortunately, few of us act on them. We are all still responsible for our actions.

Best wishes,
Joyce Graff
Executive Director
VHL Family Alliance
800-767-4845 or www.vhl.org

Bit maybe all publicity is a good thing.