DEAR DR. GOTT: My boyfriend has a rare genetic disease called Von Hippel Lindau syndrome. Many people haven’t heard of it and I don’t believe I’ve ever seen you address it. He’s 45 now and has had three brain surgeries (his first was at 21). His father, a sister and a niece have all died from complications. He has lost sight in one eye due to a tumor. His last procedure was gamma knife to try to shrink the tumor but it’s been two years and it hasn’t gotten any smaller. Also, he is beginning to have problems because of scar tissue on his brain. Perhaps you can address this disease in a future column just to educate the public. Do you know anything about possible life expectancy?

DEAR READER: Von Hippel-Lindau is a rare, genetic disorder that causes tumors and cysts to form in various parts of the body such as the brain, spinal cord, retina, kidneys, pancreas, adrenal glands and other areas of the central nervous system.
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