Little Known Cancer Striking California Familes is Discussed at USC Conference

Part of VHLFA’s National Awareness Campaign

Advocating Early Detection of VHL Tumors

Press release from the VHLFA:

Written by Victoria Mechlin
Going Global Communications

February 21, 2004 (Los Angeles, CA) – Today, VHL Family Alliance, an international organization of families, friends, physicians, and researchers dedicated to improving the diagnosis, treatment, and quality of life for individuals and families affected by Von Hippel-Lindau disease hosted a Western Regional Patient/Provider Conference on the campus of the University of Southern California.

Though most of the public has never even heard of Von Hippel-Lindau (VHL) disease, VHL occurs in every ethnic group, everywhere in the world. VHL is a genetic condition involving the abnormal growth of blood vessels in some parts of the body that are particularly rich in blood vessels. Over all, about one person in 32,000 in the world has VHL. About 20% are new mutations, and 80% are children of parents who themselves had VHL.

“For those experiencing VHL in their lives, unless they have the full picture, they can’t protect themselves, said Joyce Graff, president of the VHL Family Alliance. They need to know the enemy that they are facing. At VHL Family Alliance we want to give people a map, turn on the lights and help them learn to manage their health.”

Guest speakers at the conference included Dr. Steve Giannotta of the USC Department of Neurosurgery who talked about “Treatment Options for Hemangioblastoma” and Dr. Rich Selby of the USC Hapatobiliary and Pancreas Surgery Division, who talked about “VHL Tumors in the Liver and Pancreas, and Explanation of the Whipple Operation.”

“The exciting new technology available for VHL patients is the Cyberknife. The
technology now allows for radiosurgical treatment not only for cerebellar tumors (previously performed with Gamma Knife and Linac) but for spinal cord tumors, said Dr. Giannotta. This may allow patients to avoid open surgery for these dangerous lesions.”

“It's always good to get information out there since so few people know of this disease,” said Virginia Lanphear, a meeting attendee from Stockton, CA. Virginia began living with VHL in 1982 when she had her first surgery for a brain tumor while still attending college. She attended her first VHL meeting in the mid-90s. Though it is much more common for VHL to run in families, Virginia doesn’t know of anyone else in her family who has it. Over the past two decades she has endured brain, spinal, and kidney tumors (and pancreatic cysts). She says she is "fine" but after four brain surgeries and two kidney surgeries, her stamina and energy aren't great and she has trouble working. Next month she’s having gamma knife radiation for four new brain tumors and her doctors are monitoring the kidney tumors in her other kidney.

The USC conference was part on VHL Family Alliance’s International Campaign Advocating the Early Detection of VHL Tumors. Evidence has shown that with better diagnostic techniques, imaging scans (CT and MRI) to watch for tumors before they become a serious problem, and better and better treatments for dealing with tumors, the outlook for people with VHL is better each year. Currently, there is no cure for VHL but according to one estimate, the cure will come about the year 2025, and it will come as a result of genetic study. Meanwhile, the VHL Family Alliance is working for better management for VHL, for protection from discrimination in insurance and employment, and to encourage those in genetic research to move forward. The Alliance is also working to increase the availability of a patient’s DNA information to health care professionals to enable them to serve VHL patients better.

The VHL Family Alliance is, an international organization of families, friends, physicians, and researchers dedicated to improving the diagnosis, treatment, and quality of life for individuals and families affected by Von Hippel-Lindau disease. The VHL Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL. Local family support chapters exist in regions of the U.S. Local chapter meetings are scheduled periodically. International VHL Support Organizations are established on five continents. The VHL Family Alliance works with more than 14,000 affected people in 72 countries, with highest growth currently in Spanish-speaking countries. For more information go to www.vhlg.org