Bahrain Tribune: Hypoparathyroidism society launched

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This article from Bahrain Tribune Newspaper:

Hypoparathyroidism society launched

A Bahraini youth suffering from a rare disease has formed a first-of-its-kind society in the Middle East which would collect funds for research, creating awareness on his disease.

Bahraini, Hassan Fadhul, also dubbed Calcium Lover, is one of four people in Bahrain suffering from hypoparathyroidism since birth.
The disorder affects about four in 15,000 people worldwide because of lack of a parathyroid hormone. Hypoparathyroidism causes a decrease in blood calcium levels and a rise in the level of blood phosphorus with symptoms including tingling in the lips, hands, fingers and toes; severe muscle cramps and spasms, difficulty in breathing as well as headaches.

Fadhul now has formed the Bahrain Hypoparathyroidism Society to support and create awareness about the rare hormone disease. “I can’t lead a normal life because of this disease. It’s tough to study and work,” he told Bahrain Tribune.

There are three other Bahrainis suffering from the rare medical disorder but there are still no figures available on those suffering in the Middle East. The youth said that by setting up BHS they wanted to register patients suffering from hypoparathyroidism and work with the Ministry of Health for their treatment.

“There’s nobody to research on treatment for patients suffering from rare diseases in the Kingdom. We intend to collect data, sharing it with the relevant authorities through our society,” Fadhul said.

The Bahraini has found a patient in Iraq and is on a mission to gather data on people suffering from the hormonal disease. “I’ve regular muscle cramps and can’t even carry out daily tasks. The only medicine to help us temporarily is calcium and vitamin tablets.

“There’s no cure,” Fadhul said. The 26-year-old Bahraini who is presently undergoing hormone-replacement therapy plans to declare January 5 as National and International Hypoparathyroidism Awareness Day. “I want governmental and civic-society organisations to join hands and support our society and campaign.”

Halla Ruth Haldorsdottir became the first child in the world, on January 5, 1994, to receive a parathyroid hormone to treat hypoparathyroidism.

sandeep.grewal@bahraintribune.net

This is my picture with James Sanders, the president of the Hypoparathyroidism Association Inc in:

and this is my picture with Dr Karen Winer in NIH:

Hassan Fadhul
Bahrain

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