diagnosis
What does the VHL gene do, and how does a change in it lead to tumors growing throughout the body?
Von Hippel-Lindau disease, or VHL, is passed down in families. It happens because of a change in a gene.
Von Hippel-Lindau disease, or VHL, is caused by a change in a gene. VHL is a genetic disease. That means it is passed down from parent to child. This gene change leads to tumors and cysts growing in many parts of the body. These growths can form in the brain and spinal cord. They can also grow in the kidneys, pancreas, adrenal glands, and reproductive tract. Most of these tumors are benign, meaning they are not cancer. But some tumors, especially in the kidney and pancreas, can become cancerous over time. A genetic test can check for the gene change that causes VHL. Doctors also use imaging tests to look for tumors and cysts. Finding and treating growths while they are still small matters. People with VHL disease need careful, ongoing monitoring from a care team familiar with the condition.
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More about Von Hippel-Lindau disease
- What does it mean when VHL disease is called "autosomal dominant," and why does that matter for my family?
- What is Von Hippel-Lindau disease, and why does it cause tumors and cysts to grow in so many different places?
- What is belzutifan (Welireg), and which VHL disease tumors has the FDA approved it to treat?
- What questions should I ask my care team when talking about treatment options for kidney tumors related to VHL disease?
- When and why do doctors monitor kidney tumors with imaging instead of treating them right away, and what does that monitoring look like?
- What kind of kidney tumor is most common in people with VHL disease, and how is it different from kidney cancer in people without VHL?