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My Story

I was born with a genetic disorder called duchenne muscular dystrophy. For those of you viewing this site who may be unaware of what effects this disorder has on the body muscular dystrophy causes the gradual deterioration of muscle tissues. There are over 40 types of this disorder varying in severity. Duchenne muscular dystrophy is considered to be one of the most common and severe forms of muscular dystrophy.

Although it may be considered one of the the "worst" forms to have there are different severities of duchenne. In my case I don't follow the typical pattern of the disease. According to the typical duchenne pattern my condition should be worse. I seem to have a combination of beckers(a less severe form of muscular dystrophy) and duchenne.

Anyway my mothers family doctors was the first person to suspect I had duchenne muscular dystrophy. This was when I was about 4 years old. Approximately 1967. At this time blood tests could not determine if I had muscular dystrophy. This could only be done through a muscle biopsy which my parents felt wasn't really necessary.

My mother was determined not to allow DMD to make me different from other children. She didn't want me to be seen as or treated as different. She mainstreamed me with everyone else. I went to the same elementary, middle and high school as everyone in my district. As a result I never viewed myself as a child with a disease and I didn't allow my disability control my life.

I was always slower and weaker than other children. But I didn't start to become disabled until about 10. I developed difficulty walking and by twelve I was forced into a wheelchair because I was constantly collapsing from muscle weakness and leg tendon contractions.

I stayed pretty mobile all the way through high school. I was able to move my arms and hands and was able to be dropped off at school in the morning where I was able to take care of myself until I was picked up after school. Aided by an electric wheelchair I was able to get myself from class to class, use a school locker, and go to the cafeteria on my own where I could feed myself. The only thing different for me was that I needed to use a urinal in the nurses room so it could be emptied and I wouldn't need to carry it with me.

I was able to do most things on my own throughout high school. It was only a few years after I finished high school that I started to become severely disabled. When I was in my early twenties I began to develop breathing difficulties and about a year later I began to use a ventilator.

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