Kids and teens

Young people with VHL have questions and concerns. Share your experiences dealing with your parents, your brothers and sisters, your friends, school, etc.


Surgery and college

  • By elainef66 · New reply 5:13 pm
  • 4 replies
  • After a few years "off" from dealing with VHL, complications are arising on several fronts... Our 19-year-old daughter, who's a college freshman, has a new cyst developing associated with a slow growing ...

Trial drug

  • By lyndseys1mom · New reply October 23, 2013
  • 2 replies
  • I was wondering if anyone has tried or heard of the drug Angiostatin? Its suppose to stop the tumors from growing any bigger? Is it for kids or adults? Side effects? Didnt find much on the internet! Thanks ...

Protective eye wear

  • By lvanney · New reply May 7, 2013
  • 8 replies
  • My 16 year old daughter has just been diagnosed with VHL. She has 5 tumors in right eye and a brain tumor in the medulla. Her retina specialist has informed us that she needs to wear glasses everyday ...

New Tumor Journey

  • By VALPO · New reply April 18, 2013
  • 8 replies
  • Well we are on another journey with my 16 year old granddaughter. Treated eye tumors for 9 years until she lost all sight in Sept of 2012. Now our journey will be treatmenting body tumors. She had a urine ...

Pre-teen support in Cleveland area

  • By joyceg98 · New reply April 7, 2013
  • 1 reply
  • There is an 11-year-old boy with VHL in the Cleveland area who would like to talk with other kids who have VHL. Is there a family in the Cleveland area who would be willing to meet him? Best wishes, Joyce ...


  • By VALPO · New reply April 2, 2013
  • 8 replies
  • My 16 year old granddaughter has VHL..A recent urine test indicated she may have a pheo. I understand they are rare but how rare in teenagers. We are waching her blood pressure also...what is normal for ...

Telling your child they have VHL

  • By mountaincindy · New reply July 1, 2011
  • 5 replies
  • We received the positive diagnosis on Monday for my almost 7 yr old daughter (she has a birthday on 6/30). My 9 yr old son does not have it , nor does my 15 month old daughter. Is it better to tell them ...


  • By MomCindy · New reply February 8, 2011
  • 15 replies
  • my 6yr old daughter was diagnosed with a vhl mutation causing her to have polycythemia at 9months old since then we have been going 1-3 times a month for treatment to keep her hemoglobin levels down no ...

Schools for blind

  • By VALPO · New reply December 15, 2010
  • 3 replies
  • My 14 year old granddaughter is blind in one eye and her vision in the other eye is very low. So far she has been in the regular school system but will start high school next year. At her current school ...

Missense mutation

  • By Inge2912 · New reply November 30, 2010
  • 7 replies
  • Hello readers, I am new to this website but not new to VHL. A bit more than 2 years ago my son (3 years old at that time) was diagnosed with a pheo at his left adrenal gland and at the same time another ...


  • By eramsteven · New reply July 4, 2010
  • 16 replies
  • My son, Michael will be having surgery on June 28 to remove 2 pheos from his left adrenal gland. We will be travelling to NIH on June 22 for pre op testing. Please keep us in your prayers and thoughts ...

Pheo symptoms in children

  • By kimbre · New reply June 7, 2010
  • 7 replies
  • Can anyone please share their experience with me related to signs and symptoms of pheos in young children? Any behavioral signs? Your knowledge is greatly appreciated! Just trying to decide if behaviors ...


  • By ireland22 · New reply March 6, 2010
  • 3 replies
  • MY family and I all have VHL except for my sister can her son be a carrier and should he be tested ...

Mayo Clinic

  • By oliveoil79 · New reply February 26, 2010
  • 8 replies
  • I was Dx a year ago with VHL, I have a 3 yr old and want to know the pro and cons about getting him tested. Plus anyone go to Mayo, will be back in May 2010 for a f/u ...

When to tell your children about VHL

  • By ballroomdancer · New reply November 30, 2009
  • 9 replies
  • What approaches have other parents used when they felt it was the right time to tell their children about VHL disease? What age do you think is appropriate for a child to know about their parent's medical ...

Child with VHL

  • By twebb0506 · New reply September 16, 2009
  • 5 replies
  • My 12 year old daughter has VHL and has had multiple laser surgeries to remove a tumor from her eye. She has also watched her Father suffer and pass away from VHL. Passed a year ago July 16th. She has ...

ultrasound screening for children

  • By marieP · New reply August 12, 2009
  • 9 replies
  • Joyce, You mentioned in the discussion about Crohns disease that ultrasounds are not a good method for detecting tumors in the abdomen, yet in the VHL handbook it is recommended annually for ages 11-19 ...

PGD - Preimplantation Genetic Diagnosis

  • By DebWestbrook · New reply May 14, 2009
  • 12 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 ...

young children and vhl

  • By kimbre · New reply April 26, 2009
  • 13 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 ...

Treatment of optic nerve tumors

  • By Ali1214 · New reply April 9, 2009
  • 27 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 ...

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