diagnosis
What is Von Hippel-Lindau disease, and why does it cause tumors and cysts to grow in so many different places?
Von Hippel-Lindau disease, or VHL, is a rare disease that runs in families. VHL causes tumors and cysts to grow in the body.
Von Hippel-Lindau disease (VHL) is a rare disease that causes tumors and cysts to grow in the body. These growths can form in several places, including the brain, spinal cord, kidneys, pancreas, adrenal glands, and reproductive tract. Most VHL tumors are benign, meaning they are not cancer. However, tumors that form in the kidney and pancreas can sometimes become cancerous. VHL is a genetic disease, which means it is caused by a change that runs in families. It is inherited, so it can pass from a parent to a child. Symptoms of VHL depend on the size and location of each tumor or cyst. A genetic test can check for VHL, and imaging tests are used to look for tumors and cysts. Treatment usually involves surgery, and some tumors are treated with radiation therapy instead. Detecting and treating VHL early matters, since the goal is to treat growths while they are still small. People with VHL benefit from careful, ongoing monitoring by a doctor or team experienced with the disease. Your care team can answer more questions about how VHL affects different parts of the body.
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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 does the VHL gene do, and how does a change in it lead to tumors growing throughout the body?
- 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?