Many diseases receive the attention of the information media, World Health Organization, other health organizations and non-government organizations. Certain diseases have an international day during which the information media focus on the disease, conferences held, events organized and funds are raised in support of research and the development of cure or treatment for the disease. For example, 14 November is the International Diabetes Day, 3 November the International Cancer Day, 1 December the International Aids Day, 7 May the International Asthma Day and 17 August the International Alzheimer Day… etc.

However, certain rare diseases, such as Hypoparathyroidism, do not receive such attention and tend to be neglected. I often wonder why there is no international day for Hypoparathyroidism, like other diseases. Hypo parathyroid patients are humans and they too, like other patients, endure sufferings from the disease.

I conceived the idea of having an International Hypoparathyroidism Day some time back and I was thinking of the day which would be most appropriate for being the international day of this disease. During my search for an effective treatment I came across an article about the treatment of the disease by synthetic human parathyroid hormone injections at the NIH in Maryland under the supervision of Dr. Karen Winer. Halla Ruth was the first hypo-parathyroid patients to receive this new treatment which was a great success. The treatment was administered on 5th January 1994, and I told myself that this is day I was searching for; this is an historic day and should be very appropriate to serve as the international hypo-parathyroid day. On this day the new treatment brought smiles and happiness to patients, this day took them from the claws of despair to the worm embrace of hope.

I was chatting with Halla Ruth on the internet and I told her about my suggestion to make 5 January an international hypo-parathyroid day. She agreed whole-heartedly with the suggestion, especially that this day was very important and very dear to her. On this day she was born again. I then wrote a letter to Mr. James Sender about this suggestion. He agreed with the suggestion and promised to work towards making it a reality. I posted the suggestion at the Society’ forum on the internet and the Society’s Yahoo Group. Again all members supported the suggestion. Thereafter, I wrote a number of articles in local newspapers about this suggestion.

I received an invitation to attend an international Hypoparathyroidism Conference in Maryland, USA organized by the Hypoparathyroidism Association Inc. In an address to the Conference I put forward my suggestion to mark an international Hypoparathyroidism day on 5th January of every year. All those present welcomed my suggestion including the president of the Society Mr. James Sender who announced that the Society will work towards implementing the suggestion.

After returning to Bahrain I continued to write articles in local newspapers. I must mention here with thanks that I received every understanding and cooperation from journalists and the local newspapers..

The Hypo-Parathyroidism Association launched an international campaign to make 5th January an international Hypoparathyroidism day. The president sent letters to all Society members urging them to participate in the campaign, advising them that every member should work towards implementing this suggestion in his/her country. Mr. James Sender launched a campaign in the US by sending letters to senators at the Congress to seek their support. He also took part in a television program about this subject, published a number of articles in local newspapers, sent letters to a number of doctors and hospitals and he continues to pursue his campaign.

Mrs. Gudrun Ruth, the mother of Halla from Iceland, the first patient to receive the new treatment, started a campaign in her country by sending a letter to the wife of their president. She also wrote a number of articles in a number of local and European newspapers.

In Bahrain, I started for my campaign by writing a number of articles in Arabic and English local newspapers, and I will continue to write in local newspapers and I hope that I will have the opportunity to appear on television so that my word may reach a wider audience.

There are a number of objects for the International Hypo-parathyroid Day, including the following:

1. Promoting Public Awareness of the Disease:

Large numbers of people do not know the nature of this disease and some of them never heard of it at all. When a person asks you about this disease and you tell him its name he gets surprised because they never heard of it before. For them it is as perplexing as a puzzle. We will make use of the international day to educate the people by distributing information booklets, holding seminars, and educating patient

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

The presentation is a discussion on her experiences in treating me with Parathyroid Hormone and how it has changed my life.

I have added my doctor’s presentation in Google video:

[googlevideo]http://video.google.com/videoplay?docid=-4619010352796793796[/googlevideo]

There are very important notes to the Middle East. You should watch this video!

Hassan Fadhul
Bahrain

Gulf Daily News Newspaper has published a new topic about my campaign to increase the awareness in the Middle East about my disease (Hypoparathyroidism):

Drive to fight rare disease
By Rebecca Torr – Gulf Daily News Newspaper(Published July 27, 2008)

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 five 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 patients, 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 could 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 health 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

Hassan Fadhul

Bahrain

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