In 2010, a research group in The Netherlands published research on the emotional impact of VHL. The study confirmed that VHL disease caused increased distress for VHL patients and their loved ones. Frequent worries about future development of VHL-related tumors affected nearly half of those studied. The Patient Natural History Study has also revealed that people with VHL, when compared with the general population, are much more likely to suffer from anxiety or have panic attacks.
VHL patients and caregivers are encouraged to seek help if they are struggling with feelings of distress. Other families with VHL are there to listen and to share their own experiences, which may help you gain a different perspective on the problem. Listen and learn, or join in the conversation. It can be frightening to reach out, but it is worse to be alone.