Dear friends, this is my friend Abdullah's story of his life with HIBM. As I get to meet and know other friends with this rare disease, I have become increasingly touched, and humbled to hear their stories. I have learned more about my suffering by listening, relating, and sharing our similar challenges. Thank you Abdullah for sharing with us.
This might be the first time that I am telling my detailed story and battle with HIBM disease. Actually, I have known about this disease since I was a child. Maybe not under its current name, but I definitely knew already what it could do and how it could hurt.
I was exposed to its different phases through forty years of my life. My first introduction was when I was five. At that age I saw my father arriving at our village after a long time of disappearance for medical treatment in the city as I was told.
I saw my father then pulling up his legs from the ground, trying to walk, and struggling to prevent himself from falling on the narrow rocky walkways of our village with two of our relatives standing on each sides near him ready to help. I knew by then that my father was different, such that his return turned out to be a sad occasion.
I got used to my father being physically weak, so I got used to being careful when I played with him or got close to him since just a little bump could make him fall down. This disease somehow became part of my life ever since.
Time flew and months turned into years. I grew up quickly and completed my college training to become a naval officer. I was even lucky enough as to make my dream come true: joining the Naval Flight School to become a pilot for the Navy.
During my flight school days and when I was 22, I started to notice some strange signs of becoming easily fatigued after running or heavy exercises. I was really athletic at that time, and I thought of many reasons for these strange body responses, but I never came close to the thinking that I had a muscle disorder similar to what my father had.
I had earned my wings and have flown (Navy) aircraft for three years. However, the symptoms of weakness and improper functioning of my lower limbs continued to grow, but I kept denying those realities, and resisted visiting a doctor, possibly because I suspected the answer all along.
It did not last long before I had to see a flight physician for an annual flying medical checkup. Once the doctor completed his routine checkup and started to sign my “fit to fly sheet”, he asked “did you suffer from any problems?" I answered him with painful feelings, "I believe that I am not safe to fly." “Why,” the surprised doctor asked. I mentioned to him that I didn't really know what was the matter, but my legs muscles were not strong enough to prevent my feet from dropping. The doctor then sent me to a neurologist to diagnose my case.
In my visit to the neurologist, I remember that he came out to welcome me and, as I was walking to his exam room he was observing my walking style. He surprised me with this question: “Do any of your parents have a muscular problem?" Before my “yes” answer and in those very few seconds of pause I realized that my flying days were over and my whole life would not be I had hoped.
With no doubt, the diagnosis was thus muscular dystrophy, which later was correctly confirmed as HIBM. The disease that had weakened my father’s body had just begun to do its destruction on my young body.
The fact that I was almost fit and having only minor walking problems, and simultaneously recognizing that I would soon be in a wheelchair was not an easy idea for me to accept. Adapting to the whole idea of living perpetually with a disability was indeed a very difficult journey.
It took me a couple of years to accept HIBM as part of me, and it took me a few years more trying to ignore it and continue my life. Naturally, at first it was very hard to deal with this illness. Often I just I hated the ever progressing mobility limitations that that restricted what I could do, and it changed my life style. However, my God (Allah) gave me the required acceptance and the satisfaction to realize that this was my fate, and that I should appreciate the other gifts that were given to me.
With extraordinary support from my wife without whom I could not imagine my life plus the support of my great family and friends, I was able to positively turn my life around and focus on my achievements. With a successful marriage, five wonderful kids, and recognized educational and career successes, there was no reason for me to complain.
Although I am trying to enjoy each day of my life as it comes along, my hope is to get stronger. I fervently hope in the near future a treatment will be available for myself and others who suffer from HIBM.
Abdullah's Story:
This might be the first time that I am telling my detailed story and battle with HIBM disease. Actually, I have known about this disease since I was a child. Maybe not under its current name, but I definitely knew already what it could do and how it could hurt.
I was exposed to its different phases through forty years of my life. My first introduction was when I was five. At that age I saw my father arriving at our village after a long time of disappearance for medical treatment in the city as I was told.
I saw my father then pulling up his legs from the ground, trying to walk, and struggling to prevent himself from falling on the narrow rocky walkways of our village with two of our relatives standing on each sides near him ready to help. I knew by then that my father was different, such that his return turned out to be a sad occasion.
I got used to my father being physically weak, so I got used to being careful when I played with him or got close to him since just a little bump could make him fall down. This disease somehow became part of my life ever since.
Time flew and months turned into years. I grew up quickly and completed my college training to become a naval officer. I was even lucky enough as to make my dream come true: joining the Naval Flight School to become a pilot for the Navy.
During my flight school days and when I was 22, I started to notice some strange signs of becoming easily fatigued after running or heavy exercises. I was really athletic at that time, and I thought of many reasons for these strange body responses, but I never came close to the thinking that I had a muscle disorder similar to what my father had.
I had earned my wings and have flown (Navy) aircraft for three years. However, the symptoms of weakness and improper functioning of my lower limbs continued to grow, but I kept denying those realities, and resisted visiting a doctor, possibly because I suspected the answer all along.
It did not last long before I had to see a flight physician for an annual flying medical checkup. Once the doctor completed his routine checkup and started to sign my “fit to fly sheet”, he asked “did you suffer from any problems?" I answered him with painful feelings, "I believe that I am not safe to fly." “Why,” the surprised doctor asked. I mentioned to him that I didn't really know what was the matter, but my legs muscles were not strong enough to prevent my feet from dropping. The doctor then sent me to a neurologist to diagnose my case.
In my visit to the neurologist, I remember that he came out to welcome me and, as I was walking to his exam room he was observing my walking style. He surprised me with this question: “Do any of your parents have a muscular problem?" Before my “yes” answer and in those very few seconds of pause I realized that my flying days were over and my whole life would not be I had hoped.
With no doubt, the diagnosis was thus muscular dystrophy, which later was correctly confirmed as HIBM. The disease that had weakened my father’s body had just begun to do its destruction on my young body.
The fact that I was almost fit and having only minor walking problems, and simultaneously recognizing that I would soon be in a wheelchair was not an easy idea for me to accept. Adapting to the whole idea of living perpetually with a disability was indeed a very difficult journey.
It took me a couple of years to accept HIBM as part of me, and it took me a few years more trying to ignore it and continue my life. Naturally, at first it was very hard to deal with this illness. Often I just I hated the ever progressing mobility limitations that that restricted what I could do, and it changed my life style. However, my God (Allah) gave me the required acceptance and the satisfaction to realize that this was my fate, and that I should appreciate the other gifts that were given to me.
With extraordinary support from my wife without whom I could not imagine my life plus the support of my great family and friends, I was able to positively turn my life around and focus on my achievements. With a successful marriage, five wonderful kids, and recognized educational and career successes, there was no reason for me to complain.
Although I am trying to enjoy each day of my life as it comes along, my hope is to get stronger. I fervently hope in the near future a treatment will be available for myself and others who suffer from HIBM.
