Genetic counseling of prospective parents is quite important. It is important for them to know that each child born to an affected person has a fifty percent change of developing the disease. In the case of my family, my father had von Hippel-Lindau disease and my mother and he had four children, including myself, all of whom have the disease. Whether those who have the disease should have children is a very personal decision which only they can make, but they should be made aware of the risks.

As for myself, I have a 16 month old baby boy; and although I hadn't planned on having children, the thought of terminating the pregnancy never entered my mind. I've lived a normal healthy childhood, I climbed trees, played football with my brothers, did everything a normal child would do and my life continues to be rewarding. I am working on a bachelors degree in journalism and am enjoying every aspect of motherhood.

There are no guarantees in life; you just do the best you can. I am not suggesting that it's O.K. for everyone with VHL disease to have children. I am merely pointing out my own personal viewpoints on the subject. You and you alone are responsible for the decisions you make.

From the booklet Von Hippel-Lindau Syndrome: a booklet for patients and families, written by Johannah N. and published 1992 by the University of Iowa Department of Medical Genetics, Dr. Mary Waziri Curtis, Chief.

As published in the June 1994 VHLFF, 2:2. For permission to reprint, please contact the VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org

childbearing choices