A CAMPAIGN to support and raise awareness of people suffering from a rare hormone disease has been launched in Bahrain.

It is being spearheaded by Bahraini Hassan Fadhul, who has lived with the rare condition hypoparathyroidism since he was a child.

The medical disorder affects approximately four in 15,000 people worldwide and is caused by a lack of the Parathyroid Hormone.

It 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; brittle nails; dry hair; severe muscle cramps and spasms; difficulty in breathing; headaches; calcification in vital organs; kidney stones; and kidney failure.

About 65,000 people in the US and about 120,000 across the world live with the disease, but there are no figures for the Middle East.

Mr Fadhul, 26, is now launching his awareness drive after living with idiopathic hypoparathyroidism since he was four years old.

He is being supported by Salmaniya Medical Complex consultant physician Dr Ghazi Al Mahroos, who has already helped establish a society for patients with sickle cell disease.

Mr Fadhul's plan is to create awareness about the illness and bring together all patients in the Middle East with the disease to form their own society.

The Hypoparathyroidism Middle East Society will be a branch of the American Hypoparathyroidism Association Incorporation and provide information and support to sufferers in the Middle East.

Mr Fadhul is now searching for other patients and so far has found one in Bahrain and another in Iraq.

He has already launched a website (www.hassanfadhul. com) for his campaign to help establish the society.

It contains information about Mr Fadhul's experience of hypoparathyroidism, information about the disease and is sponsored and designed by King World.

Mr Fadhul also plans to hold an awareness day on January 5.

"I am very eager to establish a hypoparathyroidism society in Bahrain to help hypoparathyroidism patients in the Middle East," he told the GDN.

"It is difficult to meet patients with the same disease in our kingdom and the Middle East, but still I am very keen to keep the people here aware about the disease.

"The society will support members by giving advice and information. It will also aim to increase understanding about the condition and fight for better treatment and care."

Mr Fadhul has chosen a butterfly for the society's logo because it resembles the shape of the thyroid gland, where the parathyroid gland is located.

Dr Al Mahroos said patients with rare diseases such as hypoparathyroidism needed a network where they could gather information and support.

"In the UK and US there are societies for all diseases where patients can gather and seek advice, services and fight for patients' rights," he said.

"We need this in the Middle East and Fadhul is hoping to establish a society here for those with hypoparathyroidism."

Mr Fadhul, who is also known as Calcium Lover, presented his campaign at the Third Annual Hypoparathyroidism Patient Conference held in Maryland, US, last month.

American Hypoparathyroid-ism Association Incorporation president James Sanders applauded Mr Fadhul for his campaign and efforts to establish a society.

He also thanked Mr Fadhul for proposing that January 5 be designated as the National and International Hypoparathyroid-ism 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," said Mr Sanders.

"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.

Fadhul's 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."

The conference was attended by about 70 doctors, nurses and other experts.

Mr Fadhul was prompted to help other hypoparathyroidism patients following 22 years of suffering with the disease.

At one time, his symptoms were so severe that he was forced to stop all sports and strenuous physical activities, as well as drop out of an electrical engineering degree course at Bahrain University.

However, on January 2, 2006, he became the first person in the Middle East to receive a new form of drug to treat his condition.

With the support of the Bahrain Human Rights Watch Society and the Health Ministry, he was one of only a few people outside the US granted permission by those testing the drug to receive the medication.

Joslin Diabetes Centre consultant internist Dr Nasreen Al Sayed is monitoring Mr Fadhul's treatment because it is still under trial at the National Institute of Health, Bethesda Maryland, US.

The Food and Drug Administration announced at the conference that it would approve synthetic parathyroid hormone injection by 2010.

Mr Fadhul will participate in a study at Massachusetts General Hospital, in Boston, in an effort to find out why he developed the rare disease.

He has now returned to Bahrain University where he is studying information technology, but is hoping to get a scholarship to study health education or public education at Johns Hopkins University, Maryland.

His life has changed so much because of the new treatment that he now celebrates two birthdays, his actual date of birth on June 20 and January 2 - the day he first took the synthetic parathyroid hormone injection.

"I was fighting a battle against the disease and I won the battle. However, the battle is not over yet," he said.

Those wishing to support the campaign should contact Mr Fadhul via his website www.hassanfadhul.com or hassan.fadhul@gmail.com. becky@gdn.com.bh