vhl alliance

For Kids & Teens

If you, your friend, or a family member is diagnosed with VHL, it can be scary and confusing. For kids and teens, this can be particularly stressful.


If you just received a diagnosis, please remember: although VHL disease is rare, you are certainly not alone. The good news is that by being diagnosed early, you can learn how to manage the disease most effectively.

If a family member was just diagnosed, you may be at risk for having VHL, too. Ask your doctor or your parents to determine if you, too, should have a genetic test for VHL.

In either situation, please remember: taking on new responsibilities while also dealing with having a chronic condition, like VHL, can lead to increased stress. It is important to manage your stress levels and talk to your parents if you feel you cannot handle any additional responsibilities. Teenage years are a time of great changes and challenges, and having a disease like VHL can heighten your level of stress. There are a number of resources to help you learn to cope with stress and develop strategies to lessen its effect on you.

Check out these resources to learn about how to cope if you or someone you know has VHL disease.