In an effort to better understand preferred terminology when speaking about topics related to carriers and females with dystrophinopathy, and to do our best to use language inclusive to all, Jett Foundation conducted a Carrier Terminology Survey. The survey was released via email and Jett Foundation’s social media platforms to those in the Duchenne community throughout the months of June and July of 2023.
One of the questions asked on Jett Foundation’s survey reads as: “What do you prefer to call yourself or be called?” Of 60 individuals who completed the survey, results showed 65% prefer “carrier” when referring to themselves. 13.3% answered as “manifesting carrier,” and small percentages of respondents chose other terms including: female affected with an X-linked disorder; DMD carrier; patient; female with dystrophinopathy; no affiliation with Duchenne carrier status; or other.
The survey also asked respondents, “In the world of medicine/genetics, if someone is speaking about someone affected by an X-linked disorder, or if you are reading about it, what terminology would you like to see used?” The term “carrier” was also answered as the highest percentage for this question (31%). “Patient with an X-linked disorder” came in at 19%, “other” at 13.8%, “person affected by an X-linked disorder” at 5.2%, and all other terms chosen at less than 2%.
“We want to ensure we use updated terminology that makes our community comfortable across all our programs and communications,” says Jett’s Director of Programs, Alexa Tinsley. “We are thankful to everyone who took the time to respond to our survey and provide feedback on preferred terminology. With these results, we can continue to be inclusive of all when discussing various topics in the community.”
Jett Foundation will host the first session of its newest support group, Carrier Conversations, on September 14, 2023, at 11am ET. Carrier Conversations is a monthly virtual support group for women in the Duchenne community who are carriers of Duchenne muscular dystrophy (whether they are manifesting or not). For more details and registration for Carrier Conversations, please visit our website.
