diagnosed with vhl

• By elainef66
• Posted April 9, 2007 at 3:50 pm

Welcome Sky_feather!
You seem to have joined us in at a time of relative excitement about making the news (McCoy family article) which will probably lead to a whole number of more or less accurate articles in the news: you have come to a great place for balanced information - and support for days when you might need it. For the best overview and detailed information of the manifestation of VHL go to the www.vhl.org website, and look up the handbook... I'd include the link but it appears the site might be down at the very moment; perhaps more traffic than ever due to the news?... Give them a little time, it is really an awesome reference.

In short individuals with VHL are at a higher risk for a variety of tumors, but not all will necessarily occur in a person's lifetime, and not to everyone with the flawed gene will get tumors...
You will find here folks who've had all sorts of VHl related issues, and some with practically none. Since you have not run into any identifiable problems since 1991, you may well be one of the fortunate people with few developments: my 46 year-old sister-in-law lost an eye in her teens, and has not had ANY tumors anywhere since! My husband and their mother haven't fared quite as well. It can vary hugely between individuals.
It would be helpful to us to know if you've had any scans done at any time since you eye surgery: i.e. brain, spine, kidneys, pancreas, follow-ups on the eyes, etc. If you haven't right there is an important place to start, if you have, and you know the results, that gives us a better idea of what might be helpful to you to know from us (Otherwise you may find yourself with lots of not very helpful /relevant details).
Some issues, like kidney cysts and tumors can go without symptoms for a very long time, so it is important to get screened even if you have no problems (once identified in many cases they can go for years under supervision, so don't immediately imagine the worst either) It is most often a case of remaining watchful, and avoiding nasty surprises... The much publicized pheos can be in the really nasty surprise category, since they can cause dangerously high blood pressure spikes - they also are somewhat rare, and frequently run in families depending on the particular VHL mutation found. (our family has no record of any...)

Let us know a little more about yourself, and we will try to answer your questions as they come.

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