From her seat on a national youth council, Lake Mary teen Emmily Stufflet uses her voice to help lift up others battling her debilitating disease
When she was three years old, Lake Mary High School junior Emmily Stufflet was diagnosed with a disease a toddler would have a hard time pronouncing: Charcot-Marie-Tooth disease, otherwise known as CMT.
Though you might not have ever heard of it before, CMT is actually fairly common. In fact, it’s one of the most common inherited neurological disorders and affects about one in 2,500 people in the United States. Sometimes, though, Emmily says she feels like she might be the only person in Central Florida with CMT. In part, that’s because the disease has many variations, some with less obvious symptoms, and it is most commonly diagnosed in later adolescence or even adulthood.
CMT affects both motor nerves – those that control voluntary actions like walking, speaking, and swallowing, as well as sensory nerves, which can result in a great deal of pain– but it is not a terminal illness and has no effect on life expectancy.
Like many forms of the disease, Emmily’s particular kind of CMT causes weakness in her legs and feet, and she uses a wheelchair. However, she is different than most with CMT in that she doesn’t feel any pain because of the condition. She’s only met one other girl who has a form of the disease similar to hers – and that girl lives in Iceland. Emmily’s best friend, whose CMT is a completely different variation, lives in Ohio.
At the beginning of 2019, the national Charcot-Marie-Tooth Association (CMTA) created a Youth Program to help connect young people living with CMT so they could feel more support, encouragement, and understanding. The organization hoped that youth with CMT would find a national voice that could empower them and help them bring more awareness to the disease. Emmily was invited to be one of 10 teenagers on the inaugural national CMTA Youth Council, and she attended a retreat in Denver, Colorado, last summer to meet the other Youth Council members.
“It was such a cool thing to connect with them,” Emmily says. “We talked about things we all go through and how we might be able to make them better.”
The council formed committees to focus on fundraising and outreach. Emmily is on the social media committee, where she helps run the group’s Instagram account.
Emmily’s committee began the Instagram account in August, and they already have more than 300 followers. They encourage other young people with CMT to participate in challenges and interviews and to send in videos of themselves in an effort to help them find their own voices when it comes to their disease.
“It shocked me when I realized how many other teenagers with CMT are not vocal about it,” Emmily says. “I was diagnosed when I was very young, and growing up, I was always very, very vocal about it. I just learned to live my life and to accommodate for it.”
But Emmily began to recognize that those whose symptoms developed over time and were not diagnosed until they were a tween or a teen often had trouble accepting their condition.
“It’s harder for them,” she says. “I grew up not walking well, but when you are in high school or middle school and trying to make friends and – it sounds so cliché – trying to find yourself, it’s difficult to deal with the diagnosis. I think connecting with those people is really important so we can let them know they’re not alone and they can do it, because we’re doing it.”
The CMTA Youth Council has become a support group and a second family for Emmily.
“I can tell them about anything,” she says. “It has been great to talk and connect with people who have a completely different type of CMT than I do. We talk about how everybody’s different, and CMT affects us differently, but in the end, we all have it. We experience some of the same symptoms.”
When Emmily was first diagnosed with CMT, her parents – Shane, a history teacher at LMHS, and Angela, who is an LMHS school counselor – scrambled to attend national conferences to learn all they could about the disease and what Emmily’s life would look like. They quickly stopped going, Emmily says, because they found the speakers and attendees to be “so negative about their lives.” Now, Emmily speaks at those conferences, herself, and she is anything but negative. Her parents could not be prouder of her.
“Emmily is such an intelligent, motivated, and caring girl,” says Angela, an LMHS graduate, like her husband. “Many times through the years, as she has had to overcome physical obstacles and work to figure out an alternate plan, we have laughed together and said, ‘Well, what else are you going to do? It is what it is.’”
That sense of humor and optimism has helped Emmily face her challenges with positivity and strength.
“I love that as Emmily has grown, she has found out just how helpful and powerful her voice can be, both for herself and for so many others,” says Angela. “She has made profound connections with people, and she is making a difference.”
Her father might spend his days teaching teenagers about American and European history, but he says his youngest daughter teaches him how to live.
“We try to look at her CMT in this context: Everyone is dealing with an issue, and for Emmi, it just happens to be CMT,” says Shane. “Her beauty is in how she’s deliberately chosen to deal with it. To her, it’s less a disability and more simply a part of who she is.”
You can follow the CMTA Youth Council Instagram account @CMTAYouth and follow Emmily’s account @EmmilyStufflet.
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