Von Hippel-Lindau Disease

Introduction: Von Hippel-Lindau Disease

Von Hippel-Lindau Disease: Von Hippel-Lindau syndrome is an inherited multi-system disorder characterized by abnormal growth of blood vessels. While blood vessels normally grow like trees, in people with ... more about Von Hippel-Lindau Disease.

Von Hippel-Lindau Disease: Genetic disease causing multiple benign tumors. More detailed information about the symptoms, causes, and treatments of Von Hippel-Lindau Disease is available below.

Symptoms of Von Hippel-Lindau Disease

• Hemangiomas - tumors from blood vessel overgrowth:
  • Eye hemangiomas
  • Cerebellum hemangiomas
• Symptoms depend on location of the tumors - the symptoms may include:
• Headaches

See full list of 28 symptoms of Von Hippel-Lindau Disease

Less Common Symptoms of Von Hippel-Lindau Disease

• Hemangiomata of face
• Adrenal hemangiomata
• Lung hemangiomata
• Liver hemangiomata
• Multiple cysts of pancreas

See full list of 14 occasional symptoms of Von Hippel-Lindau Disease

Diagnostic Tests for Von Hippel-Lindau Disease

• Eye tests
• Ophthalmoscopic examination
• Brain CAT scan

Read more about tests for Von Hippel-Lindau Disease

Wrongly Diagnosed with Von Hippel-Lindau Disease?

• Misdiagnosis of Von Hippel-Lindau Disease
• Underlying causes of Von Hippel-Lindau Disease (possibly wrongly diagnosed)

Causes of Von Hippel-Lindau Disease

Read more about causes of Von Hippel-Lindau Disease.

More information about causes of Von Hippel-Lindau Disease:

• Von Hippel-Lindau Disease as a symptom

Treatments for Von Hippel-Lindau Disease

• Surgical tumor removal
• Irradiation
• Treatments for eye tumors:
  • Laser eye surgery
  • Cryosurgery

See full list of 6 treatments for Von Hippel-Lindau Disease

Videos for Von Hippel-Lindau Disease

Patient Surveys for Von Hippel-Lindau Disease

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Prognosis for Von Hippel-Lindau Disease

Prognosis for Von Hippel-Lindau Disease: The prognosis for patients with VHL depends on the location and complications of the tumors. Untreated, VHL may result in blindness and/or permanent brain damage. With early detection and treatment the prognosis is significantly improved. Death is usually caused by complications of brain tumors or kidney cancer. (Source: excerpt from NINDS von Hippel-Lindau Disease Information Page: NINDS)

More about prognosis of Von Hippel-Lindau Disease

Reseach about Von Hippel-Lindau Disease

Visit our research pages for current research about Von Hippel-Lindau Disease treatments.

Clinical Trials for Von Hippel-Lindau Disease

The US based website ClinicalTrials.gov lists information on both federally and privately supported clinical trials using human volunteers.

Some of the clinical trials listed on ClinicalTrials.gov for Von Hippel-Lindau Disease include:

• Study of Brain and Spinal Cord Tumor Growth and Cyst Development in Patients With Von Hippel Lindau Disease - This study is no longer recruiting patients (Current: 23 Nov 2006)
• Genetic Study of Patients With Inherited Urologic Malignancies - This study is currently recruiting patients (Current: 23 Nov 2006)
• Treatment of Von Hippel-Lindau (VHL)-Related Hemangioblastoma With PTK787/ZK 222584 - This study is currently recruiting patients (Current: 23 Nov 2006) - PTK787/ZK 222584
• EYE001 to Treat Retinal Tumors in Patients With Von Hippel-Lindau Syndrome - This study has been completed (Current: 23 Nov 2006) - EYE001
• Diagnostic and Genetic Study to Identify Pancreatic Lesions in Patients With Von Hippel-Lindau Syndrome - This study is currently recruiting patients (Current: 23 Nov 2006)

See full list of 23 Clinical Trials for Von Hippel-Lindau Disease

Statistics for Von Hippel-Lindau Disease

• Medical statistics for Von Hippel-Lindau Disease
• Prevalence and incidence statistics for Von Hippel-Lindau Disease
• Death and Mortality statistics for Von Hippel-Lindau Disease
• Society statistics for Von Hippel-Lindau Disease

Medical Guidebooks and Ebooks for Von Hippel-Lindau Disease

• Icon Health Sourcebook for Von Hippel-Lindau Disease

See all guides and ebooks for Von Hippel-Lindau Disease

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Article Excerpts about Von Hippel-Lindau Disease

Genes and Disease by the National Center for Biotechnology (Excerpt)

Von Hippel-Lindau syndrome is an inherited multi-system disorder characterized by abnormal growth of blood vessels. While blood vessels normally grow like trees, in people with VHL little knots of blood capillaries sometimes occur. (Source: Genes and Disease by the National Center for Biotechnology)

NINDS von Hippel-Lindau Disease Information Page: NINDS (Excerpt)

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. (Source: excerpt from NINDS von Hippel-Lindau Disease Information Page: NINDS)

Definitions of Von Hippel-Lindau Disease:

An inherited familial cancer syndrome which is characterized by development of capillary hemangioblastomas of the central nervous system and retina; clear cell renal carcinoma; pheochromocytoma; pancreatic tumors; and inner ear tumors. The syndrome is associated with germline mutations of the VHL tumor suppressor gene, located on chromosome 3p25-26. Symptoms of VHL syndrome may not be apparent until the third decade of life. CNS hemangioblastoma is the most common cause of death, followed by clear cell renal cell carcinoma. --2004 - (Source - Diseases Database)

Von Hippel-Lindau Disease is listed as a "rare disease" by the Office of Rare Diseases (ORD) of the National Institutes of Health (NIH). This means that Von Hippel-Lindau Disease, or a subtype of Von Hippel-Lindau Disease, affects less than 200,000 people in the US population.
Source - National Institutes of Health (NIH)

Ophanet, a consortium of European partners, currently defines a condition rare when it affects 1 person per 2,000. They list Von Hippel-Lindau Disease as a "rare disease".
Source - Orphanet