Student Helps Bring Awareness to Disease
By Jennifer Duda
There are many things in Nicole Kramer's life that have changed since being diagnosed with Friedrich's Ataxia.
The College of DuPage freshman may be unable to play volleyball or softball - sports she once enjoyed - but the 18-year-old Villa Park resident now kayaks and still enjoys cycling on her new blue recumbent bike. She's also participated in fundraisers for the disease that's changed her life.
A debilitating, degenerative neuro-muscular disorder, Friedrich's Ataxia affects one in 50,000 people in the United States. FA symptoms include loss of coordination in the arms and legs, fatigue, aggressive scoliosis, vision impairment, hearing loss and slurred speech. Additionally, some FA patients, like Kramer, develop serious heart conditions.
Click here to watch a recent ABC-7 segment on Kramer.
Diagnosed her freshman year of high school, only a few of Kramer's close friends at Willowbrook High School knew of her condition until she was highlighted at a school assembly.
"When I did a presentation at school no one really knew about the disease," Kramer said. "I'm not the kind of person to just walk up to someone and talk about it, but people are also afraid and won't ask."
Kramer's willing to talk about her experiences and has become involved with FARA, the Friedrich's Ataxia Research Alliance. Over the last few years, Kramer has attended camps for other FA patients, surrounding herself with others who understand, firsthand, the impact of the disease.
"It's easy to ask how I am, but it's hard for anyone without FA to really understand," she said. "A bad day is when my heart's not happy. It's almost like an elephant is sitting on your chest. You can breathe, but there's a lot of pressure."
There are days Kramer will use a walker at home, but overall she prefers to navigate life, both at home and at school, unassisted. Her FA family, as she calls them, provides a much-needed support system as well as opportunities to socialize with other FA patients and raise awareness about the disease.
College of DuPage, meanwhile, offers Kramer an opportunity to earn credits while determining what specific career she'd like to focus on. Kramer is finishing up her first semester, planning to complete her general education requirements and possibly earn an associate's degree before transferring to Southern Illinois University or the University of Illinois to study behavioral science.
Kramer said she also plans to continue her efforts to raise awareness of FA. Attending various FARA events not only help with that goal, but give FA patients more opportunities to meet and share information on how they are living with the disease.
"It's important to find someone to relate to," she said. "When you're with FA people, they're family."
2014 College of DuPage