As the California Chapter Chair, I have had my share of rewards for doing this work, and the rewards come from seeing others benefit tremendously from the help provided by the VHL Family Alliance.

Just yesterday I received a follow-up telephone call from the sister of a man fighting for his life in a hospital. In her first telephone call, the sister related that the doctor was not able to determine the exact cause of her brother’s current and dire problem. I referred her to the 800 telephone line (1-800-767-4VHL) because they would have more experience understanding the symptoms her brother was experiencing. In the follow-up call, I learned that it took just two symptoms for the VHLFA 800 line volunteer to suggest that the brother might have intracranial pressure, which suggested a different area of the body than the doctor had been investigating.

The doctor then took a CT-scan of the brain and immediately had his patient transferred to Stanford University for a shunt insertion and future surgery. Needless to say, the sister was so grateful and deserves tremendous praise for aggressively helping her brother. And what a wonderful job the 800 line volunteers are doing.

I would like to relate one more instance of help someone received from the VHLFA. In this case a woman attending our California Chapter meeting last April at Stanford University related in a roundtable discussion that although VHL runs in her family and DNA testing revealed she did carry the defective VHL gene, she has been lucky to have no symptoms. After careful inquiry, it was revealed that she had not been undergoing the recommended screening. It was strongly suggested by many others at the meeting that she have an abdominal CT-scan for possible kidney lesions whose presence often does not provide symptoms until an advanced stage.

In a letter to me this grandmother wrote, "I know it was meant to be that our family was at the Family Alliance seminar at Stanford so I would be encouraged to take my tests more seriously and not procrastinate. I dilly-dallied about taking the tests and didn’t really push it since I felt so good and didn’t manifest any symptoms. I truly believed my cardologist/internist didn’t believe there was anything like VHL bothering my health, and he was just as surprised at the test results as I was. I had my surgery and I’m doing fine. I’m glad the tumors in my kidneys were found now and we were able to take care of the matter before really serious problems developed. Anyway, thank you for organizing the local VHL meetings whereby I was able to contact Derrick, Bruce and Patti and speak to each one before going in to speak to my urologist and making the decision to operate."

I am proud to be a cog in the wheel of the VHLFA that is doing so much to help people have an easier time in dealing with VHL. This is what life is all about, helping each other, as these two cases reveal. Keep up the good work and support for familly members and others with VHL who can benefit from the experience and effort you can provide.

Many hands make light work! We can always use some additional hands and ears and mouths. Please call and volunteer your help. 1-800-767-4VHL or your local chapter or affiliate; info@vhl.org or via paper mail.

As printed in the VHL Family Forum 7:2, June 1999. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

chapter