Diary of a Genetic Defect, VHL, Von Hippel Lindau

An account of my thoughts and feelings about having a genetic disease. Von Hippel Lindau disease, VHL. Not necessarily factual but real all the same.

Tuesday, February 27, 2007

Breast Feeding

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As some of you avid readers may know, as I don’t have any adrenal glands I have to take steroids three times a day as replacement therapy (...
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Sunday, February 25, 2007

e-mail about dad

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hi all just to let you know the latest, dad had an appointment with prof C tonight re balance and general wobbliness. The good news is prof ...
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Thursday, February 08, 2007

wobbly father

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My parents came this weekend, it was great to see them. Each time my dad seems more wobbly. The radiotherapy took its toll and there isn...
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Wednesday, January 31, 2007

Another Day Curve

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Not much to report, feeling healthy but tired. Just making sure I keep you posted, the loyal few that is. Everything is going according to ...
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Sunday, January 21, 2007

a few days at hospital

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Just to say that next week I'm in twice for baby things. I'll let you know how it goes.
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Saturday, January 06, 2007

Day Curve

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I had to get up very early, it should have been my first day back at school but I had a Day Curve. That’s when you have your blood taken thr...
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Eye Eye

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I had my annual review for my eyes at the end of December. It was a warm day for December. My partner came with me even though I could have ...
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Sunday, December 10, 2006

Still Pregnant

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But I’m actually feeling afraid that it won’t happen. Each time I go to the toilet I check the paper to see if my period has started and I t...
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Sunday, November 26, 2006

Doing the right thing

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We are so excited that we haven’t followed convention and we have told everyone. It is so early but you know what I’m having a baby and if...
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Saturday, November 25, 2006

To Plan or not to Plan

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H ow quickly things change. I’m pregnant! Something I always hoped and prayed would happen. All those times I quietly swallowed tears whe...
Sunday, November 19, 2006

Annual review

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It’s not for a while (had appointment letter through) but I’ve been feeling uneasy, partly because my work has been very difficult and I’m a...
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Saturday, October 28, 2006

Tumours Disappear

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Another blogger has reminded me of a time when I was about 16 and I was told I had a brain tumour. They (the doctors) said they would resca...
Saturday, September 30, 2006

Dad Update (An email)

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Hello everybody Just to keep you in the know. Dad spent last week at hospital again and was thoroughly tested, prodded about and medica...
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Wednesday, September 20, 2006

Beauty Queen

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Recently I was at an event, not my sisters wedding but a big party type thing. Now as big headed as this is going to make me sound I looked ...
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Tuesday, August 29, 2006

My Big Toe

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My big toe is tingly. I’m hoping that this is due to something like an in-growing toenail. The problem is that I know my dad’s toes do ting...
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Wednesday, August 02, 2006

Aluminous Yellow

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Having VHL means that I often have to have tests on my body. I was reading through a fellow VHLer's blog and was amused by the way they ...
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Monday, July 31, 2006

Writing a will

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I wrote a will when I was 17.  It wasn’t a fully legal one with a solicitor or anything like that but I was thinking that now I’m a...
Friday, July 28, 2006

Opticians

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It isn’t all bad then, this disease of mine. I booked an opticians appointment at a well known chain of opticians, not that I think that...

An email to people

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Hi all I thought you might like to know the latest on dad. He has spent the week in St Barts and has had lots of tests and scans, it’s...

I wish

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I wish someone could fix my dad
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About Me and VHL (Von Hippel Lindau)

diary of a genetic defect
I have Von Hippel Lindau disease. Some call it a cancer. I think this is misleading at the moment. I have a few tumours and have had a few operations too. I live with it. What other choice do I have?
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