How I advocate for my community as a girl with Duchenne MD

In recognition of Duchenne Muscular Dystrophy Awareness Month in September, the Duchenne Muscular Dystrophy Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by Duchenne muscular dystrophy, written in their own words. Follow us on Facebook, Instagram, X, and Pinterest for more stories like this, using the hashtag #MDSpotlight, or read the full series.

Sarah Jenssen went to Disney World for her Make-A-Wish trip. (Courtesy of Sarah Jenssen)

My name is Sarah, and I’m a 16-year-old living with Duchenne muscular dystrophy. I am a triplet, so I navigate this crazy world alongside my sisters, Megan and Anna. I use a motorized wheelchair, and I need help with most daily tasks. I attend online school and am just starting my sophomore year. When I’m not doing schoolwork, I like playing video games and going for walks.

As a wheelchair user, I am often frustrated by the lack of accessibility I encounter on a daily basis. Whether it’s a broken sidewalk, a restaurant where I need to go in the back entrance, or a restroom that is too small for my wheelchair, it feels like the world just isn’t made for people like me. My mom and I often joke about women using the large restroom stall for more privacy during an extended bathroom visit while we sit and wait, because it’s the only one that I can use.

People often look at me and my family members with pity, and they don’t realize that we’re good! We’re happy, probably happier than most! I’m looking forward to fulfilling my goals of attending college and working in the finance industry.

I have never met another girl quite like me because being a woman with Duchenne is extremely rare, but I enjoy being part of a community with other Duchenne families. And I enjoy going to the Muscular Dystrophy Association Summer Camp and meeting other girls with other types of muscular dystrophy.