Von Hippel–Lindau Disease (VHL)
Von Hippel-Lindau disease is a genetic disorder that causes tumors to form in several organs. The most common tumors are made out of blood vessels (angiomas) and form in the brain and back of the eyes (retina). Other types of tumors form in the adrenal glands, kidney, liver, and pancreas. The tumors may or may not be cancerous.
People with von Hippel-Lindau disease are at risk of kidney cancer as they get older.
Von Hippel-Lindau disease is a genetic disorder caused by an abnormal gene.
Sometimes, the baby inherited the abnormal gene from a parent. Other times, the baby is the first person in the family to have the abnormal gene.
If doctors suspect your child has von Hippel-Lindau disease, they do:
If these tests suggest von Hippel-Lindau disease, doctors do other imaging tests to look for other tumors. They also do genetic tests to check for the abnormal gene.
Family members also need to be examined and have tests to see if they have the disorder too.
Because tumors can appear later on, people are checked regularly for tumors.
Doctors do tests to check for new tumors every 1 to 2 years. There's no cure, but treatment can help your child avoid blindness or brain damage. Complications from brain tumors or kidney cancer can be fatal.