Caroline

Diagnostic Journey 

As a child, Caroline was misdiagnosed, as many ARSACS patients are, with Cerebral Palsy. As her condition continued to worsen, her family finally decided to take her to Vanderbilt. There they did genetic testing of Caroline and her parents which led to her diagnosis of ARSACS. She noted that she had been previously diagnosed with anxiety, attention deficit disorder, and depression. Caroline actively began researching the long list of potential symptoms that could come with ARSACS which was certainly overwhelming. Many things like attending school, looking for a job, and learning how to drive a car (all “normal” teenage things) were challenging due to the some of the limitations that ARSACS caused. Caroline shared, “I mean if I can’t even carry an uncovered glass of water without spilling it (lol), how am I supposed to go through life?”

Message to the Community 

Caroline said that although she could share some uplifting things that everyone says like “you can't let your disability get you down,” she is reluctant to do so because ARSACS is extremely hard to live with. She expressed that having ARSACS may make you feel down and stressed that it’s okay to feel that way sometimes. Caroline suggests that others with ARSACS find things that they enjoy doing and not worry about others. “You live for yourself and keep working out. It sucks but is necessary. It's hard not to disappear into the sadness this diagnosis brings. Make sure you have someone to talk with about it because that does help.”

Message to Those Unfamiliar with ARSACS 

Caroline wants those unfamiliar with ARSACS to work at treating people with disabilities nicer no matter what kind of disability they may have. She reminds everyone that people with disabilities are actual human beings too and not the weird looking fish in the aquarium. Sadly, Caroline shared that she has been bullied, stared at, and whispered about through much of her life which has been painful. She emphasized that no one asks to be born with a disability and that everyone deserves a chance. Finally, Caroline expressed that she is funny, creative, brave, and kind ~ but no one can see that just by a glance.

 Hopes for the Future of ARSACS

Caroline hopes there will be a cure that would allow her to walk like everyone else. If that doesn’t happen, she wants more awareness about ARSACS and the struggles that patients go through. How we treat others, with or without a disability, matters.