Treatment & Prevention

Treatment

There is no known cure for VHL.  Treatment depends on your specific symptoms, test results, and general health.  Retinal angiomas may be treated with photocoagulation (the use of a laser beam or intense light source to fuse small areas of tissue) or cryocoagulation (the use of extreme cold to destroy abnormal or diseased tissue).  When treatment is needed, it usually involves surgery to remove tumors. However, tumors are usually only removed if they are cancerous (rare) or causing other problems, such as preventing an organ from working properly.  If tumors are not removed, they must be watched carefully for further growth.

 

 

Prevention

There is no known way to prevent the VHL gene from causing its many manifestations,  therefore, genetic counselling is advised for families with known VHL or who test positive for the gene.

If you have a family  history of the disease or know you have the gene, you can reduce your risk of serious health problems by:

 

  1. Having regular screening tests to detect VHL complications early

  2. Watching carefully for any suspicious symptoms and getting treatment as soon as they occur, for example:

  • Eating a diet high in fruits and vegetables

  • Not smoking

  • Limited consumption of alcohol

*National  Institute of Neurological Disorders and Stroke