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Why do people with VHL disease experience it so differently, even within the same family?
People with VHL disease often have different signs. This can happen even within the same family. VHL disease is a rare illness that runs in families.
People with VHL disease often have very different experiences, even within the same family. VHL disease is a rare, inherited illness. It causes tumors and cysts to grow in different parts of the body. These include the brain, spinal cord, kidneys, pancreas, adrenal glands, and reproductive tract. Most of these growths are benign. But some can become cancerous, such as certain kidney and pancreas tumors. A key reason symptoms differ is that they depend on the size and location of each tumor. A tumor in the brain or spinal cord may cause headaches, balance problems, or weakness in the limbs. A tumor near the eye can affect vision. Other tumors may raise blood pressure. Tumors can form in different organs, sizes, and at different times. Because of this, relatives with VHL disease can have different experiences. Doctors look for patterns of cysts and tumors to diagnose VHL disease. A genetic test can also help confirm the diagnosis. A care team familiar with VHL disease uses imaging tests to find growths. They watch growths closely over time.
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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 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?