Name: Chrysanthi Zouva
Where do you call home? Athens, Greece
Education (degree(s): My academic journey began with a 4-years bachelor’s degree in Geology and Geoenvironment from the National and Kapodistrian University of Athens. Due to my scientific curiosity, I continued my studies in an MSc and afterward at a Ph.D. level related to Environment and Development, linked to the Spatial Decision Support System at the National and Technical University of Athens. The range of my studies, combined with my expertise and passion will give me the opportunity to move a step forward in the research of FA in my country.
What's a typical day for you? Every morning I start my day with therapeutic swimming or gym or training with my handbike. Later I usually stay at home, cooking or working at my laptop.
How long have you known you are living with FA? I was diagnosed at the age of 20, certified by a DNA test, but my first symptoms began at the age of 17, after instability issues.
Are there any others with FA in your family? No, just me...
Describe your transition from walking to walker/wheelchair. When I was diagnosed, I was walking fine but a little clumsy. Later as FA was progressing, for about 10 years, I used to hold someone on the one hand, or clutch or walls. My house had bars almost on every wall so I can walk almost everywhere alone inside the house. But now I use a wheelchair all the time, inside and outside the house. Also, I did some adaptations in my bathroom. I have a shower and a chair to sit in there.
What do you like to do to stay active and what type of exercises work for you to stay strong? I swim twice a week, together with a therapist doing exercises for strengthening (hydrotherapy) inside the water. Also, together with my physical therapist, I do a lot of exercises for coordination, empowerment, and even walking using a big walker. Using a handbike, inside or outside my home, I improve my coordination and strength.
Do you have any hobbies or special interests? I love to travel when it is possible.
What is a good trick to make daily life easier? Go out. Talk to people. Stay close to people that love you and accept you. Try to have a social life. Work out as much as you can, it's good for both your physical and mental condition.
When FA gets you down, what do you think/do to feel better? I think it's only temporary. I have accepted my condition and the fact that there are these days also. I try to do something. Anything...Exercise, talk to someone...Tomorrow it will be another day...
What is one way living with FA has POSITIVELY affected your life? My perspective on life and people has changed. I don't have expectations from others.
What is a favorite motivational quote of yours? Live only for today
What is a piece of advice that someone with FA has given you that encourages and inspires you? Keep going...
What is the best advice YOU could give to a person who has been newly diagnosed with FA? You are not alone. We are all in this together.
What is the first thing you want to do when a cure/treatment to FA is found? I think I will start driving again...or maybe walk again on the beach....Not sure yet. It's difficult to think about the future!
"I have FA but FA doesn't have me." What does this statement mean to you? How do you live your life in the face of adversity? I have accepted and adapted my life. I keep going living with all I have now.
Tell us a little more about yous… I belong to HEFAA (Hellenic Friedreich's Ataxia Association), which was founded in 2020 by both parents of patients and patients, suffering from this rare, neuroevolutionary disease in Greece. My aim is to help everyone affected by FA inside and outside my country, by sharing my story. Thanks to FARA, I now have this opportunity. I am also grateful to my family and friends who are always supportive all these years.