When we had our children we didn’t know that we were possible carriers. When I lost my eye in 1960 the doctor thought it was a virus. It was not until my daughter and my niece were diagnosed with VHL that my sister and I learned what it was and how it was inherited. It was devastating.We have a very strong, loving, and supportive family. VHL has certainly provided us with numerous serious challenges, but it has not been the only source of difficulty in our lives. My wife is one of thirteen children, and her family has suffered a number of tragic burdens, but they always deal with it. It’s the reality of life. What helps the most is when families pull together, maintain a positive attitude and a positive outlook. Normal people have problems. Life happens.

Now with all the research going forward about VHL there has been a great deal of progress. I feel more comfortable knowing that my daughter and my nieces have the advantage of more advanced treatment. I’m still concerned about VHL, but I’m no less concerned about all the other risks that any couple faces in having a child. There is a risk of any number of birth defects-- we never know. We know that there is a strong possibility of VHL, but I feel strongly that the pluses of having children far outweigh the negatives. If we have a child or grandchild with any of life’s problems, we will address it in a responsible manner and do the best we can.

This year at age 60 I went in for my regular VHL screening and they found an aneurysm -- unrelated to VHL, but a potential silent killer. I’m going in for repairs soon. Ironically, they would not have found it if it were not for VHL.

As printed in the VHL Family Forum 6:1, March 1998. For permission to reprint, please contact VHL Family Alliance, info@vhl.org.

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