Patient Power - Medical Information and Resources - Topic: Von Hippel Lindau Disease http://www.patientpower.info en-us 2005 - 2013 Patient Power, LLC Patient Power, radio interviews with Medical Experts hosted by Andrew Schorr, America's most empowering patient Patientpower.info, Andrew Schorr Patient Power, founded by Andrew Schorr, is dedicated to helping you and your loved ones connect with leading medical experts. Gain the knowledge needed to make smart choices about your health through our extensive library of programs Patient Power is a service of Patient Power, LLC, based in Seattle and founded by two health communications pioneers, Andrew and Esther Schorr. They previously founded HealthTalk, a leader in support for people with chronic illnesses and cancer. Patient Power is devoted to helping you and your family through knowledge, to get the best medicine and return to good health. Andrew lived that. In 1996 through a routine blood test he was diagnosed with a leukemia. By reaching out to other patients and connecting with doctors who specialize in his illness he participated in a clinical trial, received "tomorrow's medicine today" and now, 9 years after diagnosis, remains in deep remission and takes no medicines. While Andrew's success won't be everyone's story, he is committed to helping each person he touches approach their illness in a way that gives them the best chance of good health: getting smart about their diagnosis, seeking out the best healthcare providers, getting second and even third opinions on what approach to take, and drawing on others for support. Patient Power is built on Andrew's two weekly radio programs, one nationally syndicated and one in Seattle. They can be heard live on the Web and past programs can be found on the Program Replay Library page. Be sure to listen and check out Andrew's Blog to comment or ask questions. He is not a doctor but can help you follow the Patient Power principles to be in better control of your own health and healthcare. Financial support for this effort comes from Andrew and Esther's own funds and sponsors who we appreciate but have no editorial control. Patient Power is not selling anything and has no agenda other than to help you feel better and be as healthy as you can be. The opinions expressed on this site and in the radio programs are Andrew's, his guests, or from callers like you. They do not necessarily reflect the opinions of our sponsors nor any outside organization. Please consult your own doctor for medical advice that is most appropriate for you. Patient Power - Medical Information and Resources questions@patientpower.info no Understanding Von Hippel Lindau Syndrome Patient Power - Medical Information and Resources. Andrew Schorr. Patientpower.info Understanding Von Hippel Lindau Syndrome Understanding Von Hippel Lindau Syndrome Von Hippel Lindau disease (VHL) is an inherited gene mutation that affects around 1 in 40,000 children born. It causes tumors to form in areas of the body that contain large numbers of blood vessels. In this program, sponsored by The University of Texas M. D. Anderson Cancer Center, Dr. Eric Jonasch and a patient living with the condition join Andrew Schorr of Patient Power to discuss the diagnosis and treatment of VHL. Dr. Jonasch is associate professor in the Department of Genitourinary (GU) Medical Oncology at M. D. Anderson Cancer Center.

The program begins with Clay, diagnosed with VHL 12 years ago at the age of 21. Clay speaks candidly about his initial diagnosis, symptoms early on, and what he’s been through in the last 12 years. He talks about the care he receives at M. D. Anderson and how he has partnered with Dr. Jonasch to take preventative measures with his health. Today Clay leads a very normal life, though is closely monitored by Dr. Jonasch and the team at M. D. Anderson.

Dr. Jonasch helps listeners to understand what VHL is and how it manifests in the body. He goes on to talk about the evaluation and treatment necessary for VHL, including an explanation of the surgeries that Clay has undergone and why they were necessary. Dr. Jonasch then discusses advocacy and research for VHL, and explains why he’s optimistic about the future. To quote Dr. Jonasch “I am optimistic. I think that we are beginning to understand how this is affecting people, and it’s a question of doing some hard work, but we are starting to get the tools necessary to make a difference, and I hope that that difference will really begin to start benefiting patients.”

]]> http://cdn.patientpower.info/p2audio/webcast/MDA102009.mp3 http://cdn.patientpower.info/p2audio/webcast/MDA102009.mp3 Tue, 20 Oct 2009 12:00 PDT 60:00 no Health, Radio, Patient, Medical, Patient, Power, radio, show, replays, podcasts, listen, now, medical, specialties, medical, experts, medical, help, archived, radio, programs, Acupuncture