September 6, 2022 / Community

Deb: My Story as a Mom to Daughters Living with Duchenne #WomenAndDuchenne

World Duchenne Awareness Day 2022: #WomenAndDuchenne

Each year, World Duchenne Awareness Day highlights a special theme for further education. This year that theme is Women & Duchenne to raise awareness about females living with ‘dystrophinopathy’ (the spectrum of muscle diseases that are caused by a change in the dystrophin gene), provide information and resources for carriers, and spotlight the female caregiver experience.

We encourage you to share your story as a girl or woman with Duchenne, a carrier, mother, caregiver, partner or sibling of a person living with Duchenne or a woman professionally working in the field of Duchenne. You can write your story and add photos, or record your experience. Publish your story on social media with the hashtag #WomenAndDuchenne to join the global community in raising awareness.

Deb: My Story as a Mom to Daughters Living with Duchenne

I have triplet daughters, age 13, two that are affected by Duchenne muscular dystrophy. One of my daughters has minor symptoms and, despite not being able to run or do cartwheels, she leads a mostly normal life. My other daughter exhibits symptoms that are much more severe. She is not able to climb stairs or walk distances. She walks with the same gait that male patients exhibit. She uses a mobility scooter at school and most other places outside of the house, and she needs help to stand up from most chairs.  

I grew up with an older brother that had Duchenne, and I knew that I was a carrier. I did not know that girls could experience Duchenne. Since my daughters’ diagnosis, we have met many other girls and women that also live with symptoms of Duchenne, some mild and some more severe.  It is so important to me that this smaller group has a voice. Carriers should be monitored, and girls with symptoms should have access to the same medical care and treatments that boys do. 

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