Young people with VHL have questions and concerns. Share your experiences dealing with your parents, your brothers and sisters, your friends, school, etc.
- By AEckerman · New reply November 13, 2008
- 9 replies
- Recent mris show several hemangioblastomas located in the nerve roots of my 16 year old. I understand that this is a rare location for most VHL spinal tumors. I was told to have her rescanned in 6 -9 ...
- By AlexAnderson · New reply October 8, 2008
- 3 replies
- Reply, Make me a friend, do whatever you can to let me know that you're in! And when you're in, Tell your friends!!! (Fundraising Ideas Needed ...
- By AlexAnderson · New reply October 5, 2008
- 1 reply
- Hey, Cancerkid here. You know my lemonade stands that I told you about? Well I have another 9 in may!! My friends in school are sooooooooo great! Instead of one lemonade stand, I had so many volonteers ...
- By AEckerman · New reply September 26, 2008
- 23 replies
- Once again, I am on a mission to find the latest information in dealing with optic nerve tumors. My 16 year old daughter, Chloe, has three eye tumors. One on the optic nerve, the other two in the other ...
- By cmdoyle · New reply August 23, 2008
- 3 replies
- Hello everyone. As you may have read in the current newsletter, VHLFA has been working for a while to create a VHL Children's Handbook. This handbook, similar to the VHL Adult Handbook already in print ...
- By AlexAnderson · Posted August 20, 2008
- 0 replies
- Hey, I'm the kid on the top right of THIS PAGE!!! That's me, And I say, kids make a difference too! I want to start a revolution, but I can't do it alone! Who's with me ...
- By chewbacca1965 · New reply June 12, 2008
- 16 replies
- I am wondering, since it is hard to find info online. I have VHL and we all know that children have a 50/50 chance of getting it. my question is, is there a connection between VHL and ovarian cyst. Most ...
- By davidw · New reply May 7, 2008
- 4 replies
- Nine of my family have V H L my monther is the oldest and my daughter is the youngest. I appear to be finding that getting the appropriate screening for her is a constant up hill battle. She is ten years ...
- By kimbre · New reply February 10, 2008
- 5 replies
- This is a 2 part question. I was just recently diagnosed with VHL and I am getting surgery for my kidney tumors next week. I have 3 boys- 5 years old, 3 years old and 20 months old. Have any of you had ...
- By DebWestbrook · New reply January 19, 2008
- 8 replies
- I have VHL and am the first person diagnosed in my family, although we do assume that my father had VHL as he died from Kidney Cancer at the age of 40. My husband and I were exploring having children ...
- By christytaylor · New reply December 19, 2007
- 6 replies
- If there is anyone out there that would care to share with me, on how the different clinics, tset young children for the VHL? My three kids, have to be in Chapel Hill tomorrow, Dec. 14th, 2007, for their ...
- By leanne3 · New reply October 14, 2007
- 2 replies
- I have Pheo as do my daughter and my Sister, two neices and a nephew. My two neices and my nephew have developed von hipple . my yougest daugher just started having migraines periodically around six months ...
- By joyceg98 · Posted September 25, 2007
- 0 replies
- Yes I Can! Award Offered to Children with Disabilities Students with disabilities, ages 2 to 21, who have excelled in various areas are eligible for The Council of Exceptional Children�s Yes I Can! Award ...
- By Hi_its_suellen · New reply May 7, 2007
- 8 replies
- Hi, I come from a family who has VHL. My grandchildren all had DNA testing, my grandson has VHL and he had a CT scan a few months ago. Last week he had an accident requiring stitches...while in the ER ...
