Birth of an Idea: Hypoparathyroidism Awareness Day

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’s families, who do not know much about the disease. The international day will be a fitting opportunity to educate such families on how to deal with the disease.

2. Moral Support to Patients

Hypo-parathyroid patients all over the world feel neglected. The information media, health organizations and doctors do not pay much attention to the disease, for no reason but the rarity of the disease.

Patients suffer in silence every day, and no one hears or appreciates the extent of their pains. We will use this international day to give moral support to patients. We will organize recreational events for children suffering from this disease, invite celebrities to conferences and seminars to be held on this day in order to make patients feel that the society cares for them and thus help take them out of the loneliness they felt for many years back, in addition to organizing arts exhibitions and cultural events, such as inviting popular singers or painters, just like the events organized for cancer patients and other diseases.

3. Supporting and Encouraging Disease-related Research and Studies

Because of the rarity of the disease, doctors and drug companies tend to be less interested in this disease, because they are more concerned with making profit than with rendering a humanitarian service. These companies think of how many patients will buy their products, and since Hypoparathyroidism is a rare disease, the market for its medicine would be limited, and therefore it would not be so profitable for drug companies.

We will use the International Hypo-parathyroid Day to promote and support studies related to the disease. Melanie of the USA is a good example of this. Melanie was conducting a study on a small hand device for testing the level of calcium, in a similar manner to testing blood sugar, but she stopped her research because she lacks financial support.

4. To Seek Obtain the Approval of Food and Drug Administration for Marketing Synthetic Parathyroid Hormone

It is generally known that synthetic parathyroid hormone injections are the best treatment of hypo-parathyroid, but this drug is not available to all patients, and in fact, only a small number of patients were lucky enough to receive such treatment. The reason for the unavailability of this treatment is two fold: first, it is prohibitively expensive and second, the marketing of the drug as a treatment for hypo-parathyroid has not yet been approved by the US Food and Drug Administration (FDA). We, again, will use the International Hypo-parathyroid Day to help obtain the approval of the FDA, and to seek make it available to all hypo-parathyroid patients.

Hypo-parathyroid patients around the world patiently wait the next 5th January, which is expected to be celebrated as the first International Hypo-parathyroid Day. We all have great hopes in a better future for hypo-parathyroid patients. We have suffered a lot and it is time that our sufferings end!

The theme of the International Hypoparathyroidism Day will be “Synthetic Hormone Injection Treatment for All Hypoparathyroidism Patients.”

The Hypoparathyroidism Association and its president and members conferred on me the honor to be their ambassador to Bahrain and the Middle East, and to be their voice in this region. I promise not to let them down and I will do all I can to help realize the objectives of the Society.

We are fighting a difficult battle with the disease, but I am confident that we will win and that we will be able to make the future a brighter future for all Hypoparathyroidism patients.

Hassan Fadhul

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