Know Your Mutation! by Berton Zbar, M.D., National Institutes of Health
Research Progress - with your help! - with your help! - report on progress on crystallizing pVHL, by Dr. Diana Griffith, Massachusetts General Hospital
Hearing Aid for VHL Patients with Bilateral Endolymphatic Sac Tumors by Marangos, Kempermann, Neumann et al.
Recent Insights into the Functions of the von Hippel-Lindau Protein by William G. Kaelin, Jr
Second VHLFA Research Grant awarded to Dr. Othon Iliopoulos, Dana Farber Cancer Institute.
Chapter Events - Michigan, Delaware, Britain, Ireland, New York, North Carolina, Mid-South, and Arizona
Success and Recognition, by Paul B., Quebec, Canada
Miracles, by Audrey C., North Carolina
Plans for Conference 1997 - Bethesda, Maryland, May 2-4, 1997
The VHL Athlete, by Jennifer K, Australia
Eddie's Story, by Linda G., Georgia
Gifts that Endure - bequests and charitable remainder trusts
Reaching More People, Funding Research - VHLFA Annual report, Fiscal Year 1996

by Paul B., Quebec, Canada

When I volunteered to write something for the VHL newsletter, I figured it would be something easy to do since I was going to entertain you about someone I thought I knew well, me. I procrastinated until I had no choice and I found myself in a bind. I wanted to write something positive about VHL and I think I found it last week.

In life, we always face choices and challenges. With VHL, you can choose to be a victim and let VHL run your life and be depressed about it or you can be positive and meet it head on. Having the syndrome meant for me that I had to give up being a career man. Every time I seemed to do well in my career, an obstacle in the form of a brain operation, kidney removal, laser in the eyes or any number of monthly doctor appointments slowed me down.

The alternative is being a family man. My wife and kids profit from it. VHL is not an issue at home and even when I have an appointment (which is frequently) it is not a big deal, since I just go and they no longer notice it. I found a part time night job to allow for my day appointments. In return I find myself spending more time at home being able to do homework with my daughter and seeing her progress. She has math problems, and with this kind of lifestyle I can give her all the support she needs.

Last week, she finally understood her math. All of a sudden everything cleared up. It's a little thing, a minute detail, but I feel that my presence at home being able to help her made all the difference. She is in sixth grade going to High School next year. I want her to be successful and if I am there at her side, VHL is responsible. I can't be part of the rat race, my health won't allow it. I might as well make a difference close at home where the results are palpable.

In the end, we all want recognition. Whether it is at work, on the golf course or at home, we want to feel we make a difference. VHL is an obstacle to be dealt with and the Family Alliance is making every effort possible to help find a cure. My job is to live my life to the fullest within my limits. For the longest time, I felt guilty because I had no big job and no big income to go along with it. I finally found my peace. It wasn't a big thing, just math being understood.

As published in the VHL Family Forum, 4:4, December 1996. 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.

mystory