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von Hippel-Lindau Disease Synonym(s): Reviewed 05-09-2002 Get Web page suited for printing Email this to a friend or colleague Studies with patients Table of Contents (click to jump to sections) What is von Hippel-Lindau disease (VHL)?Is there any treatment? What is the prognosis? What research is being done? Organizations What is von Hippel-Lindau disease (VHL)? von Hippel-Lindau disease (VHL) is a rare, genetic multi-system disorder characterized by the abnormal growth of tumors in certain parts of the body (angiomatosis). The tumors of the central nervous system (CNS) are benign and are comprised of a nest of blood vessels and are called hemangioblastomas (or angiomas in the eye). Hemangioblastomas may develop in the brain, the retina of the eyes, and other areas of the nervous system. Other types of tumors develop in the adrenal glands, the kidneys, or the pancreas. Symptoms of VHL vary among patients and depend on the size and location of the tumors. Symptoms may include headaches, problems with balance and walking, dizziness, weakness of the limbs, vision problems, and high blood pressure. Cysts (fluid-filled sacs) and/or tumors (benign or cancerous) may develop around the hemangioblastomas and cause the symptoms listed above. Individuals with VHL are also at a higher risk than normal for certain types of cancer, especially kidney cancer. Is there any treatment? What is the prognosis? What research is being done? Genetic Alliance
National Organization for Rare Disorders (NORD)
Von Hippel Lindau Family Alliance
International Radiosurgery Support Association (IRSA)
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