Hussan's Story

Calcium Lover

‘Calcium lover’—two words that sum up all my suffering with this illness.

Some might consider my love of calcium a form of madness, but only those who have lost it can truly appreciate the value of this bitter-tasting mineral.

I have returned from the depths of suffering, carrying in my hands the seed of victory born of patience, hope, and a desperate struggle… I have returned with my head held high, like a victorious warrior, to tell you my story of living with this illness, for I believe that my experience is not mine alone, but belongs to humanity as a whole.

I was born on 20 June 1982, and my first three years were normal, with no health problems. But in 1986, at the start of my fourth year, I experienced my first episode of muscle spasms in my hands and feet lasting about ten minutes, with frothing from the nose; however, the doctors at the time were unable to identify the cause. A year later, the episodes recurred more severely, and my mother insisted on carrying out the necessary tests. On 20 December 1987, it was discovered that I was suffering from hypoparathyroidism, accompanied by severe calcium deficiency; I was five years old.

Then began my treatment with calcium and vitamin D (One-Alpha), with regular monthly check-ups. Throughout my childhood, I would occasionally experience episodes that required hospitalisation and intravenous calcium, but this did not prevent me from leading a normal life. I continued to excel in my studies and played football, and this pattern continued until I was fourteen.

When I turned fifteen in 1997, my health began to deteriorate significantly. I found myself making frequent visits to the hospital due to low calcium levels and the onset of symptoms, most notably muscle cramps and pain, which gradually affected my ability to lead a normal life.

My condition reached its worst in 2001, when I was nineteen years old, and I was admitted to hospital for four months to receive intravenous calcium, as my body did not respond to conventional medication.

On 15 March 2002, I travelled to France and spent two months there. The only change in my treatment was switching vitamin D (One-Alpha) from tablets to drops, which led to a temporary improvement in my condition, but without receiving any treatment different from what I had received in Bahrain.

My condition continued to deteriorate after my return, and I was admitted to hospital again for four months until my doctor, Dr Ghazi Al-Mahrous, told me that this was the most he could offer a patient with hypoparathyroidism. Those words were enough to break me, as they meant that daily intravenous calcium would be my fate forever, but at the same time they pushed me to fight and refuse to give in.

So I decided to leave the hospital and attend daily for intravenous calcium infusions, while at the same time beginning a search for a treatment that might exist elsewhere in the world.

My journey began with a Google search for hypoparathyroidism, which led me to discover the International Hypoparathyroidism Association Inc  in the United States, and I joined it. That was in 2003, when I registered as a member. My story and photograph were published on its website, and I got to know and connect with patients from various countries around the world.

Through the newsletters and articles published by the Association, I learned about a new treatment based on injections of synthetic parathyroid hormone. After reading the story of the Icelandic patient Halla Ruth—the first patient to undergo this treatment—I was able to get in touch with her.

Her mother took up my case and, together with her, referred me to Dr. Karen Winer, the physician who conducted the first trial of this treatment and who was also Halla Ruth’s doctor at the National Institutes of Health. She expressed her willingness to offer us her support.

I also got in touch with James Sander, the President of the Association, who helped me contact Eli Lilly, the manufacturer of the medicine, and supported me. After contacting Eli Lilly, they refused because there was no licence for its use in hypoparathyroidism.

James then advised me to contact Swedish Orphan, which supplies Halla Ruth with the treatment. However, after I reached out to them, I learned that they had stopped producing the medicine. James then directed me to a new study at Columbia University with Dr. Mishaela Rubin on Neptara, and I contacted them. They initially agreed, but later withdrew, possibly due to travel restrictions, as my condition was critical without intravenous calcium.

We therefore returned to the option of Eli Lilly. We sought the help of Dr. Nasreen Al-Sayed, and through her connections within the medical community in the United States, and with the support of James Sander and the family of the patient Halla Ruth, we were able to obtain approval.

Meanwhile, the Bahrain Human Rights Watch Society supported my case, and its chairman, Mr. Faisal Fulad, took a special interest in it. Following a media and press campaign led by the Association, the Ministry of Health in Bahrain agreed to cover the costs of treatment.

On 25 December 2005, the Bahrain Human Rights Watch Society held a press conference at which it was announced that I had begun treatment with parathyroid hormone, and that I was the first person in the region and the Middle East to use this medication for the treatment of hypoparathyroidism. The following day, my story made the front pages of newspapers in Bahrain.

On 2 January 2006, I received my first injection of parathyroid hormone (Forteo) under the supervision of Dr. Nasreen Al-Sayed and with the support of the Ministry of Health in Bahrain. After receiving that injection, I felt a sense of triumph; my joy was indescribable, like that of a victorious warrior, as I had been fighting a battle against the disease and another battle to access this new hormone-based treatment.

More than three and a half years had passed since I joined the International Hypoparathyroidism Association. Those years completely transformed my life, turning it from hardship to hope.

The story did not end with receiving treatment; rather, it was a prelude to other success stories.

More than three and a half years after joining the International Hypoparathyroidism Association, I continued to dream of meeting the people who had supported me, sympathized with my cause, and offered me help—from James Sander, President of the Association, to Halla Ruth and her family, and all the Association members who had corresponded with me.

When I shared with Halla Ruth the idea of organizing a conference that would bring together patients and others interested in the disease, I discovered that she was equally enthusiastic about the idea. With James Sander’s approval, we began preparations for the Association’s first conference, which was to be held in Maryland from 22 to 24 April, and invitations were sent out.

When the long-awaited date finally arrived, I travelled to the United States. My first meeting was with Halla Ruth and her family, followed by James Sander, President of the Association, then the other members, and later, during the conference, with Dr. Karen Winer and Dr. Mishaela Rubin.

I was amazed. Was I dreaming, or was this reality? Was I really standing face to face with the very people I had corresponded with by email or spoken to on the telephone, whose photographs I had seen on the Association’s website, and whose stories and comments I had read there? It felt as though a dream had finally come true.

One of the most memorable aspects of the conference was the presence of distinguished medical leaders and experts, including Dr. Stephen Groft, Director of the Office of Rare Diseases Research at the National Institutes of Health (NIH), the Commissioner of the U.S. Food and Drug Administration, and renowned specialists such as Dr. Karen Winer and Dr. Mishaela Rubin. Their presence reinforced our belief that our cause mattered, that it was receiving serious attention, and that we were not alone in facing this disease and its challenges.

This conference was of tremendous importance and produced remarkable results. I am not exaggerating when I say that it was a historic conference that will be remembered for generations to come. It was the first conference of its kind dedicated to hypoparathyroidism.

During the conference, I proposed that 5 January be designated as World Hypoparathyroidism Day, marking the date on which Dr. Karen Winer successfully treated the Icelandic patient Halla Ruth with parathyroid hormone injections for the first time. The proposal was adopted in 2006, although the date was later changed to 1 June in 2010.

The conference also marked the beginning of a series of annual conferences in the United States, many of which I attended in the years that followed.

I returned to Bahrain from the conference, enriched by my experience in the United States, to begin the process of establishing the Hypoparathyroidism Society in Bahrain (Hypopara Bahrain) , with the support of James Sander, President of the International Hypoparathyroidism Association Inc; Liz Glenister the founder of Parathroid UK; and Ms. Helen, founder of the Hpopara Norway Association. I joined support groups around the world under the umbrella of the International Association, and together we contributed to building a better future for patients.

I founded the Association in Bahrain and transformed from a person searching for treatment into someone whom others turned to for guidance and help in obtaining treatment. Together, we changed the lives of many patients, and Bahrain became a destination for the treatment of hypoparathyroidism thanks to Dr. Nasreen Al-Sayed, who gained extensive experience with the new therapy. She travelled with me to the United States, participated in one of the conferences, and continues to collaborate with us in treating patients today.

This is not the whole story, as the details of my journey cannot be captured in just a few lines. I documented my experience in an Arabic book entitled Calcium Lover, and I am currently preparing to publish the English edition while seeking a suitable publisher.

The book is dedicated to the memory of James Sander—the man who changed my life and helped change the future of hypoparathyroidism for the better.

Today, I live a normal life and enjoy stable health. The muscle spasms and calcium deficiency that once dominated my life are now behind me. I graduated with a Bachelor's degree in Public Relations and Media, and I work as a medical journalist for the Bahraini newspaper Al Bilad.

With every injection of parathyroid hormone (Forteo), I remember Halla Ruth and her family and the support they gave me. Her story was the beginning of hope. I also remember James Sander, a man who can never be forgotten. He ignited the first flame of hope for patients, including myself, and stood by me until I finally obtained treatment. I will remain deeply grateful to him for the rest of my life.

No matter how great the advances in the treatment of our disease may become, we must always remember Dr. Karen Winer, who conducted the first trial of parathyroid hormone injections in 1994 at the National Institutes of Health. Much of the progress achieved since then can be traced back to her pioneering work. She opened the door for this treatment to become more widely available and collaborated closely with my physician, Dr. Nasreen Al-Sayed, in my treatment.

My story is not the only success story of the International Hypoparathyroidism Association and its founder, James Sander. There are many others, and they continue with the new generation under the leadership of his son, Bob Sander, who has carried forward the Association’s mission and helped fulfil many of the dreams that James and his colleagues worked so hard to achieve.

Together, we will continue to stand united and work hand in hand for a better future.