Name: My name is Natalija Stanojevic.
Age: I’m 28 years old.
Where do you call home? I was born and raised in Vienna (Austria).
What is your education? How will FA add to your future career? I’m currently studying for a master’s degree in finance. FA won’t help my future career, but it won’t hinder it either.
Who do you live with? I live with my boyfriend in a flat in Vienna.
What’s a typical day for you? I get up in the morning, go to the office, drink coffee, work a little, and then usually go to university in the evening (3-4 times a week). Sometimes I also have a free evening, which I like to spend with friends or alone in front of the TV — depending on my mood and energy levels.
How long have you known you are living with FA? When and how were you diagnosed? I was diagnosed in January 2019 at the age of 22. I already knew something was wrong when I was 19 or 20. The doctors didn’t really take it seriously back then, so it wasn’t until I went back to a new doctor 2 years later, who sent me to hospital as an inpatient, that the various tests and questions pointed to ataxia.
Are there any others with FA in your family? I’m the only one.
Describe an adaptation and/or transition you have had to take due to living with FA. I’ve used walking poles for the last four winters in the cold and snow. Since May 2024, I’ve never gone out without poles unless I’m accompanied by friends, family, or my boyfriend. Indoors, I sometimes lean on walls, but I walk without aid.
What do you like to do to stay active and what type of exercises work for you to stay strong? I’m in a rowing club where I also do strength training.
Do you have any hobbies or special interests? I enjoy rowing and going to the cinema.
What is a good trick to make daily life easier? If you need help, be bold and ask for it — it’s not a sign of weakness.
When FA gets you down, what do you think/do to feel better? I think about the good things I’ve achieved so far, even with FA.
What is one way living with FA has POSITIVELY affected your life? Through FA I am in the Para-Rowing team and have made new friends for life that I would never have gotten to know without FA.
What is a favorite motivational quote of yours? “Learn as if you will live forever, live like you will die tomorrow.” —Mahatma Gandhi
What is a piece of advice that someone with FA has given you that encourages and inspires you? These forecasts are rubbish, don’t give the power away – self-fulfilling prophecies!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? You shouldn’t care what strangers think when they see you on the street, they’re not walking in your shoes.
What is the first thing you want to do when a cure/treatment for FA is found? Try a tandem walk.
“I have FA but FA doesn’t have me.” What does this statement mean to you? Don’t let FA define you, it’s just a small part of you, not you as a whole.
How do you live your life in the face of adversity? I don’t let life get me down and stay optimistic.
Tell us a little more about you…. I’m a mix of shy and extroverted; a minimalist who still wants to get the best out of everything. One has to get used to my positive view of the world. And I’m veeeeery clumsy.
Is there support available from the healthcare system in your country? Medication, physiotherapy, and annual rehabilitation are paid for by statutory health insurance.
Do you know anyone else in your country with FA? If so, have you ever met them? There is a FA self-help group (www.friedreich-ataxie.at) that organizes face-to-face and virtual meetings several times a year. I am also on the Para-Rowing team with a fellow FA mate.
Did your diagnosis impact your friendships and relationships? No, the diagnosis didn’t affect anything. Real friends don’t care about that.
Are you a night owl or an early bird? Definitely a night owl!
Interviewed by
Jakob Mitterhauser
