30 Days of MD: How I Navigate School with Becker MD
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Photo courtesy of Renée White
Day 9 of 30
This is Joseph White’s (@whiteriverartstudio) story:
My name is Joseph. I was diagnosed with Becker muscular dystrophy when I was 9 years old. I’ve had it all my life, but I did not know it until I was in grade three.
Becker muscular dystrophy is a condition that causes progressive weakness and wasting of the skeletal and heart muscles. It mostly affects boys. The age that symptoms begin, and the rate of progression can vary with BMD.
I see many specialists who keep track of my condition and health. I have a cardiologist, a neurologist, an occupational therapist, and a respiratory therapist. So far, I am maintaining my strength and I am very thankful for that. When people look at me, they can’t see that I have MD so sometimes I have to tell them.
In gym class, I have to take breaks often because when I do too much, I get painful muscle cramps. My parents and I have to make sure my teachers know about my condition so they allow me to sit down when I need to rest for a minute. Once, one of my gym teachers forgot I have MD and did not allow me to take a break. I had to remind him. It’s hard for me to speak up sometimes, but I’m finding it easier to tell others about my condition.
My friends are very supportive. Sometimes they take a rest with me and keep me company. I also need to be careful going up ladders and stairs because my muscles can give out and I fall. My teachers also help me out with accommodations at school.
The worst part about having MD is that it makes me get painful muscle cramps. I have learned how to manage them better and how to prevent them from becoming severe.
I’m hopeful that someday there will be a cure for all types of muscular dystrophy. More research needs to be done. I participate in studies to help with research. In the meantime, I will continue to deal with my disease and help educate others about neuromuscular disorders.
Muscular Dystrophy News’ 30 Days of MD campaign will publish one story per day for MD Awareness Month in September. Follow us on Facebook and Instagram for more stories like this, using the hashtag #30DaysofMD, or read the full series.
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