vhl alliance

Emotional Considerations

People with various forms of hereditary disease commonly experience a heightened sense of stress and sadness. This is even a greater risk in patients and families with VHL, because it is more unpredictable and is an ongoing condition throughout the person’s life.      


In 2010, a research group in The Netherlands published a piece on the emotional impact of VHL. The study confirmed that VHL disease caused increased distress people who have the condition.  Frequent worries about future development of VHL-related tumors affected nearly half of those studied.

Family members and caregivers also experience a significant amount of stress, as well as exhaustion, anger, guilt, grief, and other difficult emotions. It is common to feel stressed and overwhelmed. If you are a caregiver, it is important to seek support or counseling. Studies show that those responsible for the long-term care of relatives show higher rates of illness, suppressed immune response, slower healing, and even increased mortality. In order to provide care, you need stress relief, support, and time for yourself and the rest of your family.

If you have VHL or are a family member or caregiver, it is important to get help if you have feelings of distress. Support groups and counseling can help. For more information on support, talk to your doctor or click here to learn more about programs by the VHL Alliance.

For more information about the emotional impact of VHL, please download the VHL Handbook.

For references, click here