Challenges in Child Rearing for Families with Hereditary Disease

According to the VHL Family Alliance

BOSTON, May 1

/PRNewswire/

Parents with hereditary disease face special challenges in child-rearing. One or more of the children may also be affected. May is VHL Awareness Month. Von Hippel-Lindau (VHL) is a hereditary predisposition to one or more vascular tumors of the retina, brain, spinal cord, kidney, pancreas, and adrenal glands.

"Children worry about the illness of their parents, and they worry too about their own destinies. The parents also worry about their children as well as their own health issues," says Robin Bennett, President of the National Society of Genetic Counselors. Researchers are working toward keeping tumors small, but meanwhile the standard of care is surgery.

"In spite of current medical advances," says Joyce Graff, Chairman of the VHL Family Alliance, "none of us has full control over the package of genes we pass to our children. The secret to managing VHL is to find tumors while they are small, and get the appropriate treatment – not too much and not too little, timed strategically to optimize your health."

"VHL has run in my family for many generations," says Megan, age 21. "My mom has it; my grandfather and many of his siblings had VHL. We four girls have not yet had DNA testing. We are regularly screened for symptoms. If one of us does happen to have VHL, we are all prepared to deal with it. I know I can count on my family to help and support us."

"I have found openness about my health, and clear information about what procedures are coming up, have helped my children (ages 8 and 11) stay strong," says Deb. "They know that whatever comes into their lives, God, their parents, and their local community will take care of them."

"My mother's parenting of me was very different.,"Deb continues. "She was an alcoholic, abusive emotionally and physically. I decided at a young age, that if I ever was diagnosed with VHL, I would work on responding differently. We can’t control what will happen to us, we can only control how we respond."

"My family prides themselves on being educated on VHL," says Megan. "We can control this disease and live healthy lives."

There is no cure yet for VHL, but information, watchfulness, and hope are already making a big difference. Research is leading to improvements in diagnosis and treatment. You can help too. For more information, see http://www.vhl.org or call 1-800-767-4VHL.

Broadcast-quality video interviews available on request from:

Cary J. Schwanitz, News Desk
KOAT-TV, Albuquerque, NM
505-884-6324

Oline press kit:

http://www.vhl.org/aboutvhl

Press contacts:

• Patient families:
  • contact via Joyce Graff, Chairman, VHL Family Alliance, 617-277-5667 or 1-800-767-4845, editor@vhl.org.

     

• Genetic Counselors