Call to British Patients

VHL in Britain is a hidden disease. That's the view I've come to after over a decade knowing I have the condition.

In the twelve years since I was diagnosed I have met only three other people with the same condition. During the same period, outside my team of medical professionals, I have only come across one doctor who knew what VHL was.

Yet statistically there are estimated to be 1200 of us out there, many undiagnosed, and many others feeling isolated by a confusing illness that most doctors can't even spell.

I don't know what the situation is like for people with VHL in other countries but for me it's been a confusing journey. I am treated at four different hospitals, spread all over the country. One for brain and spine, one for kidneys, another for eyes, and yet another for genetic counselling. None of these hospitals seems aware of what the others are doing and consequently tests are repeated unnecessarily and I spend up to two weeks of every year travelling between appointments for check-ups.

The situation for people with kidney problems is an entirely different story here. Treatment is well coordinated and through three national support groups there is information and advice available at every turn. As VHL led to my kidneys being removed followed by dialysis I find this very useful but it makes me realise what the VHL community here is missing.

It was not until two years ago when I bought a computer and hooked up to the internet that I discovered the VHL Family Alliance. It was through the VHL website that I first learned fully about the disease. I printed information from the site for my General Practitioner who couldn't find it listed in his medical book when I first saw him. He is now very well-informed on the subject!

There was, until some time ago, an organised UK branch of the VHL Family Alliance. Unfortunately, because of assorted health problems of people involved, the group is currently dormant. Mark East, from Leeds in the north of England, did an excellent job providing phone support to people.

Sadly, Mark died shortly before Christmas 2000. I never met Mark but I used to talk to him on the phone where I found him friendly and supportive. I'm sure there are many others he helped with his friendship and sound advice. He will be sorely missed.

During my most recent visit to the Genetics clinic at St. Marys Hospital in Manchester I spoke to my doctor about an idea I had been considering for some time. I wanted to contact all British VHL patients to ask them if they would like to form some kind of network here for patients. My doctor agreed that, in co-ordination with other hospitals around the UK, they would be prepared to send a letter to all VHL patients on their books.

This is just the first step. I don't know exactly VHL patients in Britain want. As I see it we need several things. We need to communicate with each other so that we can share information and support each other; We need to raise the profile of VHL both to the public and to the medical profession; And we need to raise funds to support research.

This is a stumbling first step. If you are British and have VHL, or if a member of your family has VHL, I would be very pleased to hear what you think about the idea of a more organised VHL group here. You can contact by e-mail - dan@newswales.co.uk - or by phone - +44 (0)1547 550684.

In addition to Dan's direct contact information listed here, the VHL Family Alliance in the U.K can be contacted by writing to info@vhl.org. Messages will be forwarded to Dan or another appropriate volunteer for action.

As printed in the VHL Family Forum  9:2, June 2001.  For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.