VHL disease varies widely from patient to patient, even among family members. Because it’s impossible to predict exactly when or how the disease will manifest in each individual, regular check-ups for potential VHL symptoms are essential throughout a person’s life. The Active Surveillance Guidelines focus on identifying common, potentially problematic manifestations early.
Most VHL-related tumours are benign, but that doesn’t mean they’re without issues. These tumours, along with related cysts, can grow and increase pressure on surrounding structures, leading to symptoms like tingling or even severe pain.
Pictured is an overview of the common manifestations of VHL. For detailed information on these manifestations and their treatment, we encourage you to download the VHL Patient Handbook developed by the VHL Alliance.
There are approximately 21,000 VHL patients in Europe. Tumors occur in the brain, spine, eyes, ears, adrenal glands, pancreas, kidneys, epididymis and broad ligament of the uterus.
