Also called: Also called: VHL
Von Hippel-Lindau disease (VHL) is a rare, genetic disease that causes tumors and cysts to grow in your body. The tumors can be either cancerous or benign. They can grow in your brain and spinal cord, kidneys, pancreas and, in men, their genital tract. Symptoms of VHL vary and depend on the size and location of the tumors. They may include headaches, problems with balance and walking, dizziness, weakness of the limbs, vision problems and high blood pressure.
Detecting and treating VHL early is important. Treatment usually involves surgery or sometimes radiation therapy. The goal is to treat growths while they are small and before they do permanent damage.
National Institute of Neurological Disorders and Stroke
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Genetics Home Reference: Von Hippel-Lindau syndrome
(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=vonhippellindausyndrome
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Von Hippel-Lindau Disease(National Institute of Neurological Disorders and Stroke) - Short Summary - http://www.ninds.nih.gov/disorders/von_hippel_lindau/von_hippel_lindau.htm
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Von Hippel-Lindau Handbook: What You Need to Know about VHL(VHL Family Alliance) - http://www.vhl.org/handbook/
Also available in Spanish http://www.vhl.org/es/folleto/index.php
- DNA Testing for Von Hippel-Lindau (VHL)(VHL Family Alliance) - http://www.vhl.org/dna/
- ClinicalTrials.gov: von Hippel-Lindau Disease(National Institutes of Health) - http://clinicaltrials.gov/search/open/condition=%22von+Hippel-Lindau+Disease%22
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Genetics Home Reference: Von Hippel-Lindau syndrome(National Library of Medicine) - http://ghr.nlm.nih.gov/condition=vonhippellindausyndrome
- Article: Neurologic manifestations of von Hippel-Lindau disease. - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18799446&tool=MedlinePlus
- Article: Abstracts of the 8th International Symposium on von Hippel-Lindau Disease.... - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18709444&tool=MedlinePlus
- Article: Concurrent robotic partial adrenalectomy and extra-adrenal pheochromocytoma resection in a... - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=pubmed&dopt=AbstractPlus&list_uids=18690816&tool=MedlinePlus
- Von Hippel-Lindau Disease -- see more articles - http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=search&db=pubmed&term=von+hippel-lindau+disease[majr]+AND+english[la]+AND+humans[mh]+NOT+(letter[pt]+OR+editorial[pt])&doptcmdl=summary&cmd_current=Limits&pmfilter_EDatLimit=last+1+Year&tool=MedlinePlus
- Clinical Care Centers(VHL Family Alliance) - http://www.vhl.org/aboutvhlfa/clinics2.htm
- Find a Neurologist(American Academy of Neurology) - http://www.thebrainmatters.org/index.cfm?key=1.2.2
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National Institute of Neurological Disorders and Stroke - http://www.ninds.nih.gov/
Also available in Spanish http://espanol.ninds.nih.gov/
- VHL Family Alliance - http://www.vhl.org/
- VHL Family Forum(VHL Family Alliance) - http://www.vhl.org/newsletter/
- Neurologic Diseases - http://www.nlm.nih.gov/medlineplus/neurologicdiseases.html
- Pheochromocytoma - http://www.nlm.nih.gov/medlineplus/pheochromocytoma.html
- Genetics/Birth Defects - http://www.nlm.nih.gov/medlineplus/geneticsbirthdefects.html
The primary NIH organization for research on Von Hippel-Lindau Disease is the National Institute of Neurological Disorders and Stroke - http://www.ninds.nih.gov/