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Symptoms
Masses can also develop in the spine, inner ear, genital tract, lung, and liver. Some people may only get tumors in one area while others may be affected in multiple regions. Only 10% of people with VHL develop ear tumors. Ear tumors should be treated to prevent deafness.
Getting a Diagnosis
Genetic testing, through ablood test, is the most effective way of diagnosing VHL. If your parent has VHL, then there is a 50% chance that you have inherited the condition. However, not all cases of VHL are inherited. Approximately, 20% of VHL have a genetic mutation that was not passed down from their parents. If you have VHL, there is an extremely high chance that you will develop at least one tumor during your life — 97% of the time tumors develop before the age of 60.
Treatment
If you have VHL, you’ll need to have frequent physical examinations, as well as magnetic resonance imaging (MRI) or computed tomography (CT) scans of the brain, abdomen, and kidneys to watch for new tumors.Eye examinationsshould also be done regularly.
1 SourceVerywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.U.S. Food and Drug Administration.FDA approved belzutifan for cancers associated with von Hippel-Lindau disease. Press release. Published August 13, 2021.Additional ReadingEvans, J. P. (2002). von Hippel-Lindau disease. eMedicine.VHL Alliance (2016). VHL Facts,.
1 Source
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.U.S. Food and Drug Administration.FDA approved belzutifan for cancers associated with von Hippel-Lindau disease. Press release. Published August 13, 2021.Additional ReadingEvans, J. P. (2002). von Hippel-Lindau disease. eMedicine.VHL Alliance (2016). VHL Facts,.
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
U.S. Food and Drug Administration.FDA approved belzutifan for cancers associated with von Hippel-Lindau disease. Press release. Published August 13, 2021.
Evans, J. P. (2002). von Hippel-Lindau disease. eMedicine.VHL Alliance (2016). VHL Facts,.
Evans, J. P. (2002). von Hippel-Lindau disease. eMedicine.
VHL Alliance (2016). VHL Facts,.
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