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Von Hippel-Lindau Disease

  • Cynthia M. Johnson, MA
Publication Type:


Von Hippel-Lindau Disease



Von Hippel-Lindau disease (VHL) is when blood vessels grow in a small knot instead of in branches. The knot forms a growth or tumor, often in the eye and brain. It is also linked to other tumors and cysts throughout the body. VHL is rare.


VHL is caused by a faulty gene.

Risk Factors

The risk of this problem is higher in people who have other family members who have it.


Symptoms differ in each person. It can start at any age, in different organs, and can cause mild-to-severe problems.

Problems may be:

  • Eyesight problems
  • Headaches
  • A feeling of spinning when a person is not moving
  • Problems walking
  • Problems swallowing
  • Weakness
Blood Vessels in the Retina of the Eye

AR00025_96472_1 Retina of the Eye NULLjpegAR00025_96472_1NULL\\hgfiler01a\intellect\images\AR00025_96472_1.jpegNULL82NULL2006-01-264054006222_22504Copyright © Nucleus Medical Media, Inc.


The doctor will ask about symptoms and health history. A physical exam will be done. Hearing and vision may also be tested.

Blood tests may be done to look for signs of the VHL gene.

Pictures may be taken of the body. This can be done with:


There is no cure. The goal is to remove tumors before they grow too large and cause problems. This can be done with surgery. Radiation therapy may also be done.


There are no known guidelines to prevent this health problem.





  • Gläsker S, Neumann HPH, et al. Von Hippel-Lindau Disease. 2018 Sep 12. In: Feingold KR, Anawalt B, et al. Endotext [Internet]. South Dartmouth (MA):, Inc.; 2000–. PMID: 25905347.
  • von Hippel-Lindau disease. EBSCO DynaMed website. Available at:
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This content is reviewed regularly and is updated when new and relevant evidence is made available. This information is neither intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to starting any new treatment or with questions regarding a medical condition.