vhl alliance

Family Members and VHL

The impact of a genetic disorder can be beyond the patient. It can affect the entire family in significant ways.


Since our genes are inherited and passed down through families, a genetic disorder has implications for the health of family members. A genetic diagnosis for one family member may mean other blood relatives are also at risk, even if they currently show no symptoms or health problems. In addition to having medical implications, genetic disorders present emotional challenges and special reproductive implications. Families may be concerned that the vhl gene will pass through them to their other existing or future children. It is inevitable that parents whether or not to test a child or a pregnancy.

Given that genetic information affects family members, it is important to consider the family unit and the impact a genetic diagnosis can have on everyone. Family members who do not have the VHL mutation and are thus unaffected may feel guilty that loved ones have to deal with the manifestations of VHL while they do not. Unaffected siblings of children with VHL may feel neglected because their parents need to focus more time and attention on their siblings.

Patients and family members are encouraged to utilize the many support resources available through the VHL Alliance including social media groups and phone discussions. VHL can be tough, and these resources are designed to ensure no patient or family member walks this journey alone.