Anxiety? Depression? Fear? Discuss how your diagnosis has made you feel and offer or ask for support here.
- By Cancerkid777 · Yesterday at 9:07 pm
- 0 replies
- I need to find a friend who I'm like. Someone who is picked on in school, has a disease, ya'know, the works ...
- By joyceg98 · August 15, 2008
- 6 replies
- I'm curious -- what family lore was in your family about how VHL was inherited, or where it began? - only affects boys - only affects girls depending on who had VHL in the family. But other things, too ...
- By donnab · August 7, 2008
- 2 replies
- I'll be at NIH Sept 21-24. I am doing scans, bloodwork and eye clinic all day on the 22nd. I have pretty much the whole day of the 23rd open and will be at OP 3 clinic on the 24th. I thought that if anyone ...
- By inferni · July 27, 2008
- 0 replies
- Hi all, A new site for those in the UK affected by VHL has been created. VHLhope.co.uk This site has been created by those with VHL and offer support to those in the UK only. No medical advice is given ...
- By gale · July 23, 2008
- 0 replies
- I tried this recipe last night, which we really enjoyed. I got it from cooks.com but I modified it a little. 1 lb yellow squash 1/4 c chopped onion 1/4 c chopped green pepper 1 c herb stuffing mix 2 tbsp ...
- By flwrgurl · July 15, 2008
- 0 replies
- first i would just like to say wow! it is really awesome that i found a website that you can discuss issues or anything really on your mind about conditions that greatly impact your life. i would just ...
- By birdmom · July 8, 2008
- 8 replies
- Hi I am a 52 year old female I have a clinical diganosis of vhl. This is going to sound crazy ,does anyone else experience sounds that hurt. I have for about 1 year been having problems with certain sounds ...
- By gale · June 12, 2008
- 1 reply
- I hope this note finds everyone doing their best. Knowing this can be different for different people, we created a meeting with you in mind. Please come join us on the 15th Anniversary that the VHL Family ...
- By batley · May 21, 2008
- 10 replies
- hi everyone ok ive come up with a problem , ive got a date , wow a date , anyway, im worried as far as this man knows im heathy and fit im really sceared after what my ex hubby did or should i say took ...
- By gale · May 7, 2008
- 8 replies
- As most of you know, this site has made a lot of changes and we, the VHLFA have also made changes. We have made a number of changes to help support our VHL Family, to better serve your needs and continue ...
- By joyceg98 · April 29, 2008
- 1 reply
- We have heard from a number of people about things in this new version of Inspire that are either confusing, or not what you would have wished for. Everyone at VHLFA and Inspire want you to be happy and ...
- By Andreea_C · April 17, 2008
- 11 replies
- I've just found out a couple of days ago that my mother in law is diagnosed with VHL syndrom. So i guess there is a posibility my husband has this disease too. I read that the chances are 50%. My mother ...
- By funmadjoker · April 9, 2008
- 6 replies
- Hi all, any idea how I can get my hands on a few of the blue vhl wristbands in the UK, I've tried contacting Tracey as while back and haven't managed to obtain some ...
- By FridayThe13th · April 6, 2008
- 9 replies
- Hi everyone I'm new to the board.Really don't know what to say right now.Some of you have probably been where I am at the moment.Last October I had a tumor removed from the right side of my spinal cord ...
- By wheelchairman36 · March 17, 2008
- 3 replies
- I know lots won't know who I am because been a long time since posting. Oprah has gave 10,000 dollars to our local ABC affiliate to desperse among 4 organizations and the one has chosen me to recieve ...
- By funmadjoker · March 11, 2008
- 14 replies
- Does anyone have any tips on writing a letter of complaint as the various hospitals can't seem to manage to get any of my appointments right or end up forgetting about me all together ...
- By SarahMcAneney · February 8, 2008
- 3 replies
- Hello all. I'm writing this on behalf of my wife Sarah who has just had a tumor and cyst removed from her brainstem. The surgery went as well as we could have expected and she is on the road to recovery ...
- By funmadjoker · January 20, 2008
- 3 replies
- Are there any vhl support groups in the Durham area (close to Newcastle for those in the UK lol ...
- By christytaylor · December 30, 2007
- 0 replies
- I was wondering if there is anyone out there, that has had a brain tumor removed from the brain stem along with a cyst. If there is someone, i was wondering how long it took for you to get usage if you ...
- By Myway · December 3, 2007
- 25 replies
- Please would you say a prayer for my son who is facing brain surgery once again on the 7th Dec. to remove a tumour with a large cyst that is pushing up againest his brainstem and causing him many problems ...
