Birth of an Idea: Hypoparathyroidism Awareness Day

by Hassan (Bahrain)

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