Educating the Community

Educating the Community

DMD is a rare disease. About 1:3600 live male births have DMD. Almost from the beginning, it’s clear that this child is “different.” Unfortunately, the advocacy and education about the disease falls largely on the shoulders of our Duchenne community. Even so, _____

As for those kids who do purposely avoid kids with Duchenne, their reasons can range from “being different,” lack of understanding, fear of the unknown and also the perpetuation of current social opinion about individuals with disabilities. They just aren’t educated about this rare disease, but we can change that.

The great news is that resources about Duchenne are easily available. Whether for teens, adults, or even medical personnel, resources are easily accessible for our community. Information about equipment they use. While there are just a few, we do have some outstanding role models with Duchenne. Business owners, singer in a band,

Once you start learning about something, without this education, the social experience for an individual with Duchenne tends to be rather bleak.

Unfortunately, the disease itself also reduces peer time with potential friends. Kids with Duchenne may simply be absent from school more often than other kids. Frequent medical appointments, participation in clinical trials, lowered immune system if on corticosteroids, and even a truncated school week prevent physical vicinity, which in turn prevents the growth of peer relationships.

Ways to help behaviors: routines, soothing the anxiety, no physical way to relieve stress, thrive on predictability, situational meltdowns…

Ways to help at school: demands of school setting, minimizing school meltdowns, the stress of socializing.

Explaining Duchenne Resources