Diary of a Genetic defect

The story so far

I’m creating this blog because when I was sitting next to my dad a few months ago now in St Barts Hospital, he was having some blood taken, a slightly batty woman, who was a nurse I believe, saw me laughing at my dad who had to lie down and he was getting grumpy about it as he ‘needed a pee’ as he put it. The woman seemed cross that I should be laughing at my dad’s misfortune and commented on the fact that I wouldn't like it if it happened to me. To which my dad simply said. ‘She’s got it too.’ We looked at each other and smiled, he rolled his eyes and the batty nurse launched into a list of questions. She asked if I belonged to any help groups, which I don’t but I did say that I’m on the email list of the VHL alliance which is based in America.

‘Oh,’ she said, ‘you should write about it, it would help so many people.’ Now she didn’t know me at all, all she knew was I had a genetic disease and I was over 20. But it made me think, maybe I should. A long time has passed and I’m going to write about it.

The disease I have is rare so there won’t be many people who have it or who want to read about my experience of it but maybe other people who have genetic diseases or are friends or family if those who do might find it interesting. Even if you don’t I find it calming to write about it and have done in diary format for sometime.

I’ll start from now but I might have to fill you in on the past from time to time.

I am female, I am currently 27, I live in north London, I am a full time teacher. I have a mortgage with my long time partner.

The disease is Von Hippel Lindau Disease or VHL if you are in the know.

http://www.vhl.org - if you want to know more.