vhl alliance

For Parents: Raising a Teen who has VHL

While people gain certain legal rights as an “adult” at age 16, 18, and 21, growing up does not happen on a single birthday. It is a process that happens over time. Learning to take responsibility for healthcare decisions is an important piece of the transition process, especially with for teens with VHL.


It is important that teens practice advocating for themselves at an early age so that they will feel comfortable taking control of their medical needs as they move from the health care they received as a child to the health care they will need as an adult.

Adults and teens do not always agree or get along. There will always be clashes between parents and children, ranging from disagreements about style to fights over curfew.  The struggle for independence can be especially complicated for teens with VHL. On one hand, it can be frustrating for teens to feel like they are treated like a little kid such as being told what surveillance appointments they need to make – especially when they are asymptomatic or simply feel ready to take care of themselves. On the other hand, teens can sometimes feel overwhelmed with the responsibility of managing their health care and might just want someone else to take care of everything. It can be exhausting to keep track of surveillance appointments and anticipate future needs all while planning for the future and trying to make healthy choices every day.

Parents and teens should work for a balance of responsibility that shifts as the child gets older and becomes more responsible for managing their own health care needs. Sometimes it helps to sit down together and make a plan for transition outlining when the teen will become responsible for each specific task. It is important for parents to prepare for the transition by educating children about VHL and involving them in health decisions and discussions. Practicing independence helps teens understand their medical needs and learn important skills for self-advocacy and healthy living.

Research shows that teens want their parents to engage in open and honest discussions about genetic conditions (Rowland and Metcalfe, 2012). Having a conversation about VHL means children can ask questions and have their parents answer them informatively and accurately. Openness also provides opportunities for children to use their parents as role models for their own coping with VHL. While disclosure of a genetic condition has been shown to improve family cohesion and strengthen familial bonding, it can be hard for parents to talk about something like VHL with their children. They might feel guilty, afraid, or just not know how to start a conversation about it. The VHLA has a Kids’ Edition of the VHL Handbook which includes some tips for parents to talk with their children about VHL. Parents may benefit from utilizing the support resources from the VHL Alliance, especially the Facebook discussion group for parents of teens who have VHL. They are also encouraged to speak with their health care provider or a social worker for additional support.