Name: Theresa Kornfell
Age: 26
Where do you call home? Zillingdorf-Bergwerk and Lichtenwörth, Austria
What is your education? In 2017, I made my A levels.
What is a current goal you have with your education? I don’t have a specific goal I want to achieve. I studied psychology for a few years at distance university Hagen, but I didn’t finish it.
Who do you live with? Since 2021, I have lived in my own little house with my two furry roommates, dog Pauli and cat Emma.
What’s a typical day for you? Every day, my assistance appears at 7 A.M. Then we mobilize my legs, and I drink tea to take my medications. Then we do everything I need to do in the bathroom and then go for a walk with Pauli. My assistance for morning time is with me until 12 o’clock, and the rest of time we do something we have to do or something I want to do. Then I take a nap, and at 2:30 P.M. comes my next assistant. I do everything I like in the morning and then I eat lunch. My assistance stays until 6 P.M. At 7 P.M. comes the last assistance. At first we visit the bathroom, and there I get ready for bed. Meanwhile, my assistant cleans the household and then goes for a short walk with Pauli.
How long have you known you are living with FA? I have known my diagnosis since 2012.
When and how were you diagnosed? When I was 10 years old (2009), I had a bicycle accident and because of that I had to stay a few days in the hospital. They found out that something was wrong in the way I walked. Then we visited a few doctors, but nobody had an answer for us. Our last try to get an answer was in AKH Vienna, and there I got my diagnosis.
Are there any others with FA in your family? No.
Describe your transition from walking to using a wheelchair. I walked until I was 17 (2018). It was very hard for me to accept that I had to sit in a wheelchair from now on.
What do you like to do to stay active, and what type of exercises work for you to stay strong? Once per week I visit a gym, and there I train with weights on my arms and legs. Twice a week I have physical therapy where I train with my own body weight, and sometimes I work on taking a few steps there.
Do you have any hobbies or special interests? I like to make huge strolls with Pauli, grocery shopping and then I cook for my two furry friends and for myself. I love to do crafting like making cards for birthdays or Christmas, and I really like to do my photo album. About one time per month I organize a brunch with my sister Rosa and my friend Lena.
What is a good trick to make daily life easier? Accepting that you can’t do everything by yourself anymore and that it is okay to ask for help.
When FA gets you down, what do you think/do to feel better? Sometimes you have to cry or to scream. Sometimes it helps to watch a funny movie or listen to music.
What is one way living with FA has POSITIVELY affected your life? For me personally, FA hasn’t had any positive effect.
What is a favourite motivational quote of yours? I don’t have any motivational quotes, but I have a favorite saying: “If there ever comes a day when we can’t be together, keep me in your heart, I’ll stay there forever.” – Winnie the Pooh
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Do everything you want NOW!
What is the first thing you want to do when a cure/treatment to FA is found? Take it.
“I have FA, but FA doesn’t have me.” What does this statement mean to YOU? FA is an illness, and it’s a part of you. You are so much more than this illness.
How do you live your life in the face of adversity? I don’t know exactly. I often try to see the beauty in every day.
Interview by
Jakob Mitterhauser
Edited by
Noah Griffith