A note from Debra

Adapting Physical Education for Duchenne Boys

Posted on October 17, 2014 4:24 pm

Those who live with Duchenne muscular dystrophy have physical activity limitations that need to be addressed at school. It is important for Duchenne boys to be included without further damaging their muscles.   

Parents need to work with their schools to assist with decision making regarding the most appropriate activities for your student to participate in. Duchenne causes muscle weakness and stiffness throughout the whole body which progressively will get worse. This means that he will experience and is already showing signs of muscle degeneration. At this time, he may be doing fairly well and it can be difficult to see that he is any different than other boys his age. It is important to understand that the activities that he currently participates in can and will have an effect on the future health of his muscles and his future functional capacity.

With Duchenne muscular dystrophy, the muscles are damaged mostly during strenuous activities, eccentric muscle contractions and prolonged activity. These activities should be avoided at all times. Squats, sit-ups, push-ups, pull-ups, running, weight training, etc. are examples of typical activities incorporated into physical education. All of these should be avoided at all times. The typical curriculum standards are subject to adaptations/modifications with the presence of Duchenne muscular dystrophy.

This is a unique medical diagnosis which requires good understanding in order to allow him to participate safely. He should still be included in his education and not isolated from his peers. Adaptations to his PE sessions will have to be made to allow him to participate without detriment to his muscles. He can emphasize stretching in his curriculum. He might be interested in being a team “coach”, score keeper, timer, or other such duty so that he still is expected to understand athletics/sports and be involved in them without putting him in potentially harmful situations.

Everyone’s goal is that he remains strong, independent and safe for as long as possible. This requires a team approach of all who are involved in his daily routines.

For more information, please check out the latest video from CureDuchenne and the Duchenne Therapy Network. 

Eteplirsen Updates from the World Muscle Society Meeting

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