It is impossible to predict how von Hippel-Lindau Disease will present or progress, therefore regular surveillance is incredibly important for people living with VHL. The VHL screening guidelines were developed by the medical community to make sure that VHL tumors do not cause additional or unnecessary damage to the body. With careful monitoring, early detection, and appropriate treatment, the most harmful consequences of this gene mutation can be greatly reduced, or in some cases, completely prevented.
Anyone who is at risk for VHL disease yet who does not have symptoms, or who is known to have VHL but does not have symptoms and those diagnosed with VHL should maintain a regular screening program coordinated by their physician. Individuals who have had a DNA test and do not carry the mutated gene do not need to participate in screening.
For the Annual Surveillance Guide Outlined by our partner, the US VHLA, click here.