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Saturday in Ontario
Agenda -Thursday - Friday - Saturday
Managing VHL in your Life
Dr. Jane Green of Memorial Hospital in St. John's, Newfoundland, chaired today's session on Managing VHL in your Life.
Dr. Michiel Innes of University of Calgary, Alberta, gave the plenary talk on genetics and VHL. Dr. Green followed, with a careful explanation of DNA testing, and her recommendations for when and how to test. Patients are free to elect DNA testing or not. Among her families in Newfoundland, moe than 90% have chosen to be tested.
Dr. Marie Luise Bisgaard of Copenhagen University in Denmark talked about the methodology they are using for coordination patient care in Denmark.
Dr. Taro Shuin of the Department of Urology, Kichi University School of Medicine, Kochi, Japan, presented the Quality of Life (QOL) survey of his patients, to assess their feelings of strength, stamina, and quality of life following repeated surgeries. His study concluded that people who have had more than three surgeries are the most likely to feel a reduction in their quality of life. Those with more surgeries of the Central Nervous System were the most likely to have limitations. The new drug therapies hold the greatest promise for reducing the number of surgeries required to manage VHL, but these drug therapies are expensive. He is working with the Japanese government to obtain greater assistance from the government for these expensive treatments.
Dr. Giuseppe Opocher of the Department of Medical and Surgical Sciences, University of Padua, Italy, presented an eight-year follow-up of the clinical work he has been doing with VHL patients in Padua. Since he was first introduced to VHL in 1997, his patient population has grown to 108 patients. He has created a clinic where coordinated care for VHL is provided to patients who enter the clinic "through a single door". Instead of the patient having to determine which specialist to see, the clinic provides the guidance and connects the patient with regular screening, and with the specialists needed to manage their health. He reported few ELST's among his patients, and he wonders if this is because of the difficulty of diagnosis in this area. He cited also that 20% of his women patients have ovarian cysts, and 25% of the men have epididymal cystadenomas.
Gillian Crawford, a genetic nurse-coordinator from the Wessex Clinical Genetics Service in Southampton, England, reported on a study she has recently conducted among eight of her patients, to ascertain what worried them the most. The diagnosis itself was not necessarily bad news -- in many cases it put an end to a long period of frustration, and finally made sense of the collection of medical problems that had been plaguing them. There were three main themes: uncertainty about the future, employment, and reproductive choices. People who were working generally felt that VHL affected their lives very little. People who were retired or out of work often felt the uncertainty and reduction in feelings of self-worth that often come with being out of work for any reason. In general, she feels that her patients are doing quite well.
After lunch we had an open discussion among the country representatives present, talking about leading our respective groups around the world -- holding meetings, communicating via telephone and e-mail, developing volunteer jobs that fit into people's lives and keep our organizations strong. We had representatives from Canada, Denmark, France, Germany, Italy, Japan, the Netherlands, Spain, Sweden, Switzerland, and the United States. The VHL Family Alliance International encourages connections among people based on political entities and health care systems, but also based on language group. For example, there are online discussion groups in English, French, Spanish, German, and Japanese. The French group consists of people from the Indian Ocean to Canada.
The power of our worldwide collaboration was palpable in the room. We were there, united in our desire to improve diagnosis, treatment, and quality of life for people with VHL. We all shared the same concerns about health and family and the desire to be well and happy. We were bonded with each other, and with the caring physicians and researchers who shared these three days with us. And as we packed up and began realizing it was time to go home, we knew that we would carry these new friends and collaborators with us.
Please make sure to join us next time!
Copenhagen, Denmark, September 4-6, 2008
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