When you think that you are the only family faced with this disease, you feel so isolated. Hearing the experiences of all the families, you realize that we are all in the same boat, and thank goodness for the VHL Family Alliance. -- Sue L., Canada

We Need Your Help! -- by Peggy M.
Meet the Board of Directors
Research Report, by Myriam Gorospe, Ph.D., Director of Research
Special Thanks to our Volunteers!
Public Education initiatives -- by Jay Platt
Challenge! -- a corporate donor supports VHLFA and others
Teamwork for Health -- quotes from conference attendees
Let's Cure VHL in this Decade!
Progress -- Annual Report of disbursements

by Karen H., Pennsylvania

I was six months pregnant with our second child when I started having headaches. They weren’t every day, but they did get progressively worse. My gynecologist kept telling me that headaches were common with pregnant women. I told him that I had VHL but that didn’t matter. Frankly I don’t think he knew what that was.

To make a long story short, I eventually was admitted to the hospital with double vision and in terrific pain. I was transferred to Hershey Medical Center in Pennsylvania where we were told I had about 24 hours to live because the pressure was so great inside my skull.

The neurosurgical team did emergency surgery and put in a shunt into my jugular vein (which I still have 20 years later). Once the shunt was installed the double vision went away. After that, I had no problems and delivered a baby girl at full term.

Three months later, I returned to Hershey and had two tumors removed from the cerebellum. I never had a brain tumor after that, although I am affected in a lot of other areas.

See also the medical article Pregnancy in VHL, with important information for the health care team.

As printed in the VHL Family Forum 9:5, December 2001. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org.Further information is available from the VHL Family Alliance, info@vhl.org.

mystory