Name: Claire Juip
Age: 16
Where do you call home? Grosse Pointe, Michigan
What is your education [degree(s)]? Currently, I am a junior in high school. When I graduate, I am hoping to study business and the life sciences.
Who do you live with? I live with my Mom, Dad, and four siblings. My older brother, Jake, also has FA.
What’s a typical day for you? On the weekdays, I’ll have PT in the morning, then a day of school. After school, I am the team manager for my school’s volleyball team (in the fall) and I work on the program and sell tickets for my school’s play and musical (in the winter).
How long have you known you are living with FA? I was diagnosed in 2017. My older brother had symptoms that led to him being diagnosed first. Once we learned about FA, my parents decided to test me and my siblings. It turned out that I did have FA, even though I didn’t notice symptoms until around two years later.
Are there any others with FA in your family? My older brother, Jake, also has FA.
Describe an adaptation and/or transition you have had to take due to living with FA. I can still walk independently, but going up and down stairs is increasingly hard for me. This semester, I had a lot of classes upstairs. Even though I don’t love asking other people for help with accommodations (because I don’t want to inconvenience them), I decided to ask for some of my classes to be moved downstairs. As hard as it was to ask for this, it has made my life so much easier. So, seeing how a small change for others has made a big difference for me will make me less hesitant to ask for help in the future.
What do you like to do to stay active and what type of exercises work for you to stay strong? I go to physical therapy twice a week.
Do you have any hobbies or special interests? In my free time, I like to hang out with my siblings. We like to watch movies, play games, and bake. This spring (and hopefully summer!) I am volunteering at a lab at Wayne State that is researching iron chelation and synthetic frataxin, which is such an amazing opportunity!
What is a good trick to make daily life easier? I always tend to rush things and do too many things at a time, which causes me to fall or trip. So, my trick is to remind myself that I shouldn’t rush things and that it’s okay to take multiple trips to get something rather than risking a fall.
What is one way living with FA has POSITIVELY affected your life? The FAmily is definitely the best! Throughout my years of living with FA, I’ve met so many new people who also have FA. I have a great group of FA friends who I can text with, meet up with during the symposium, or to celebrate each other and our accomplishments.
What is a favorite motivational quote of yours? I love the quote “Believe you can and you’re halfway there”. This quote means a lot to me – especially as someone with FA – because when I believe I can do something, then it is a lot easier. Even if it is something like going up the stairs when I’m tired, or doing the last set of exercises in PT, or something along those lines, believing that I can do something makes it so much easier.
What is a piece of advice that someone with FA has given you that encourages and inspires you? I think the first FAer that I ever met was Kyle Bryant. When we met him, I was impressed with his positive outlook on life. That has encouraged me to always be positive and optimistic, even if FA is getting me down.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would tell a person who is newly diagnosed to join the community! Meeting people with FA has been a highlight of having FA, so I would tell people to reach out to our community!
What is the first thing you want to do when a cure/treatment to FA is found? Give a giant hug to Mr. and Mrs. Bartek, Mrs. Farmer, and all the FARA workers for all of their hard work throughout the years! Thank you guys so much!
“I have FA but FA doesn’t have me.” What does this statement mean to you? Even though I have FA, it doesn’t define who I am! I am so much more than my FA.
Tell us a little more about you…. I think the best way to help progress in FA is to participate in research! My brother and I have done so many biomarker studies and clinical trials – in so many different places. It’s always so fun to travel with my brother, but even better to know that I am helping the FA community in a meaningful way. Although it wasn’t easy at first, I’ve grown my voice in FA advocacy. Whether it’s talking with my friends, United Against Ataxia Hill Day, or our family’s annual fundraiser, I believe that raising awareness about FA is one of the most important steps to finding a cure. Together we will cure FA!
Interviewed by
Mary Nadon Scott
