I encourage ONLY SURGICAL HYPO-PARA-THYROIDISM onsets respond to this ONLY them no matter what Dr Dan .Ruan said. I feel that there is a HUGE enough difference that it needs to be separated because of the cancer issues and the way the patient is treated and ignored because of errogance on the physicians side usually by making the mistakes they made during the surgeries.
Secondly: we as a separate group have many issues totally different in how we are perceived in the medical community and treated imo. Most Edocrinologists believe [especially in Emergency rooms ] that you can treat many of us out of ER [ I want Chronic clinics set up for chronic illnesses too ] most patients MD clinics are not set up for IV calcium fusions.
This is for surgicals please take the time and go to Harvards site and fill out the questionaire please*This is from James Sanders news letter produced yesterday October 7,2009
Thanks ,ShawnLfprb
Washington State HpTh President
Hypoparathyroidism Association Special Bulletin
October 7, 2009
Dear Friends and Associates,
From time to time we have been asked to assist the medical community in medical research to help them understand Hypoparathyroidism, a rare medical disorder which has invaded our lives. Some of these requests are for patients to participate in a patient study involving new methods for treating the disorder, such as the patient studies being conducted by Columbia University College of Physicians and Surgeons and the National Institutes of Health. Others simply involve completing a questionnaire.
The research, regardless of the method, serve to assist medical researchers in finding better regimes for treating the disorder, and to help them understand the impact the disorder has had on our lives. The Hypoparathyroidism Association has always endorsed the research and encouraged our members to participate.
The new study by the Endocrine Oncology group at Harvard Medical School and the Harvard School of Public Health is one such study and only requires the participants to complete an on-line survey which should only take a few minutes to complete.
While the survey is geared to surgical onset Hypoparathyroidism, your responses can be important. Please complete the survey by clinking on “HERE” below. Your time will be well spent.
James Sanders, President
Hypoparathyroidism Association, Inc.
An Invitation to Participate in an Important Medical Survey
An Endocrine Oncology research group from Harvard Medical School and Harvard School of Public Health is conducting a study that compares the perceptions of hypoparathyroidism from surgeons and preoperative patients with people who actually live with hypoparathyroidism.
The survey asks for your views about your health as an individual with permanent hypoparathyroidism. Your responses will indicate how you feel and how well you are able to do your usual activities.
There are 28 questions that should take around 9 minutes to complete, including a series of demographic questions at the end. The information you provide is completely private and completely anonymous. There are no questions that involve identification.
To take the survey, you have to click “HERE” .
Some of the questions are not phrased perfectly, so please help by marking the one box that best describes your answer.
Thank you for your participation.
Dan Ruan, M.D.
Harvard Medical School