We are sad to report that Gillian Houlders passed away unexpectedly at her home in Hampshire while in her sleep on August 4. The cause of her death is not yet known. Gillian had recently undertaken to head the U.K. affiliate of the VHL Family Alliance. She attended the Symposium on MEN and VHL in the Netherlands with Joyce Graff from the U.S. and Chris Hendrickx from Belgium. She met many of the VHL expert doctors there, and was enthusiastic in her plans for the VHL group in the U.K.

Although she ran the support group for only a short time, she touched the hearts of many of us in that time, both in England and at the Holland conference. Chris and Joyce remember her with pure admiration. A feisty lady with a delightful sense of humor, she was filled with everyday courage and unflagging good humor, and with deep love for her husband, Brian, who cared for her at home and helped in her work with the support group, and for her daughter Natalie, age 16.

Gillian had a very difficult road with VHL. Her brother was diagnosed with VHL in 1989, but the doctors didn’t check Gillian until two years later. When they finally saw her scans, the doctors told her she needed surgery immediately, and had her sign a release to do whatever was required. When she woke up, she found they had removed her kidneys, pancreas, gall bladder, and spleen. "They felt that the cysts and tumors were so large that there was nothing to do but remove the organs." Today, much more is known about the management of VHL, and techniques for organ-sparing surgery are much more advanced. With early diagnosis and careful management, and with information on the latest treatment options, such a radical procedure should no longer be necessary. It is this information that Gill wanted to carry to families with VHL and to their physicians.

"I have taken over the running of this vital group because I want to prevent people going through what I have," she said. She worked tirelessly to raise awareness about the disease. Her main objective was to educate doctors and GP’s (general practitioners, internists), to let them know the first signs of VHL so that treatment could be undertaken earlier.

Gill’s daughter Natalie, 16, had DNA testing two years ago and does not have VHL, and Gill’s three other siblings are also clear.

"She was a fighter," Brian says. She went through over 40 operations in the past six years but always bounced back like a bubble. She was a real hero. We are just grateful that she died peacefully at home and did not suffer." Gill was grateful to have such a wonderful family and friends.

We share Gill’s hope for the future: "With all that has been learned in the last six years," she said, "the message to others is clear: this disease does not have to be a terminal illness. It is very treatable if you work with your medical team, find tumors early, and take appropriate action. There is more hope at this time for people with von Hippel-Lindau than ever before."

A raffle was held in the renal unit at St. Mary’s Hospital, Portsmouth, in July to help fund telephone and postage costs and a British-based newsletter. Of an estimated 1800* people in the U.K. with VHL, only about 500 are currently identified. There are many more people in the U.K. who have the faulty gene, many of whom do not yet have the right diagnosis.

Gill’s life, her enthusiasm, and her courage have inspired many to carry on her very important mission: to find others with VHL and raise the visibility of VHL in the medical community and the general public so that others who may not yet have a diagnosis will get the information and the treatment they need to stay healthy.

"I want to ensure that as many doctors as possible are made aware of this disease," Gill said. "Von Hippel-Lindau is so rare that most GPs are ignorant of it. If I just save one person from going through what I have had to go through all this will have been worth it."

Gillian laid a solid foundation for the VHL Support Group in the U.K. The British group is reorganizing and is looking for volunteers to join the committee and share the work. If each person can do a small amount, there will be strong support for everyone who needs it. If you can help, please contact Dora Beeforth at +44 1931 716031. Additional information will be posted on the announcement at the main number in London +44 171 681-1796 (Tel/Fax), or via E-mail at info@vhl.org.

* Calculating 1:32,000 based on projections from Dr. Eamonn Maher, Birmingham, England, on a population of approximately 60 million (Population Reference Bureau, Inc.).

As published in the VHL Family Forum 5:3, September 1997. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.

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