The Hypoparathyroidism Middle East Society!!
July 27th, 2008Hello everyone
I’m Hassan from Bahrain, and I have a rare disease called hypoparathyroidism. I’m a member in the Hypoparathyroidism Association Inc in the United Satate (Here my story ). I have participated in their three conferences in Maryland. I’m interested to establish a society about this disease in the Middle East. I have got support from James Sanders, the president of the Hypoparathyroidism Association Inc and this his message to the Middle East:
Prior to August 1994, the date I published the first Hypoparathyroidism Newsletter, there were no associations in the world specifically devoted to Hypoparathyroidism, a rare medical disorder which affects approximately 4 out of 15,000 worldwide.
Since that humble beginning, the Hypoparathyroidism Association has grown to over 2800 members in 65 countries. Similar associations were formed by members of our Association in the United Kingdom, the Nordic Countries, and in the European Community, bringing patients, family members, and members of the medical profession together.
Many of the members of our Association are actively participating in patient studies being conducted at the National Institutes of Health in Bethesda, Maryland and at Columbia University in New York City in the United States. These patient studies will not only increase medical knowledge about Hypoparathyroidism they will one day lead to a more effective, and approved, regime for treating the disorder.
Physicians working with our Association as medical advisor’s work closely with physicians around the world to help treat patients who are not able to physically come to the United States for treatment and they help those patients find an adequate supply of medication when necessary. Hassan Fadhul, from Bahrain, is one such patient who has benefited from this assistance.
When I first met Hassan Fadhul a few years ago he had been in the middle of his struggle to find answers about the medical disorder which had invaded his life as a youth. That journey had taken him to France and other places and had mostly been futile. We had been working with working for Dr. Karen K. Winer at the National Institutes of Health, in Bethesda, Maryland, and Dr. Mishaela Rubin at Columbia University in New York City and their work using some form of Parathyroid Hormone to treat Hypoparathyroidism. Although we were not able to get Hassan into one of the patient studies at the time, we were successful in helping to get him evaluated by them and to help get him on the regime in Bahrain. Dr. Nasreen Al Sayed, at the Gulf Diabetes Specialist Center in the Kingdom of Bahrain became the primary physician working with Hassan, Dr. Karen Winer and others to help him.
At this point in time, hassan has been on the Parathyroid Hormone regime for almost two years and has showed a marked improvement in his health.
Throughout the world, and in Bahrain, members of our Association work to help increase public and professional awareness about Hypoparathyroidism, a medical disorder relatively few medical professional truly understand.
At the first Annual Hypoparathyroidism Patient Conference in April, 2006, Hassan Fadhul proposed designating January 5th as the National and International Hypoparathyroidism Awareness Day. January 5, 1994 was the date that Halla Ruth Haldorsdottir became the first child in the world to receive Parathyroid Hormone to treat Hypoparathyroidism, a disease she was born with. She has been on essentially the same regime longer than any person in the world. Treating Hypoparathyroidism with some form of parathyroid hormone holds the greatest promise for patients throughout the world.
Having January 5 recognized as the International Hypoparathyroidism Awareness Day a concept which originated from Hassan, in April 2006, will bring public and professional awareness about Hypoparathyroidism in Bahrain, the Middle East, and the world.
His efforts to found a Hypoparathyroidism Association in the Middle East will be a tremendous resource for patients and their families. The Hypoparathyroidism Association applauds his efforts and looks forward to his success. He will make a difference in the Middle East.
James E. Sanders, President
Hypoparathyroidism Association, Inc.
2835 Salmon
Idaho Falls, Idaho 83406
United States of America
1-208-524-3857 (USA)
e-mail # 1: hpth@hypoparathyroidism.org
e-mail # 2: hpth@cableone.net
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Hassan, I think that what you’re doing is great. You are raising awareness about a little known, and little understood disease, and thereby giving people around the world a better chance of getting treatment, and hopefully, God willing, eventually finding a cure.
But you are also doing something else, as well. You are showing that people around the world, from all different backgrounds, do care about one another, and are willing to help one another. So in a way, you are daring to build bridges.
I hope that you succeed in your mission to found a society in the Middle East that will devote its attention to this disease. I hope that you also continue to succeed in building bridges.