Dragana 1 Name: Dragana Obadić

Age: 32

Where do you call home? I grew up in a small town called Glina, and after college I moved to Čakovec, Croatia.

Education (degree(s): I graduated from the Faculty of Management in Tourism and Hospitality with a master of economics degree.

Who do you live with? I live with my husband.

What's a typical day for you? I worked at the hotel reception. Currently I am on sick leave because I was researching what was wrong with me because of my walking difficulty. Right now I'm more dedicated to myself - I do exercises every day and occasional walks, but my husband is always with me. At the end of the day, I like to watch sitcoms or good movies with my husband. We have two dogs that we take care of.

How long have you known you are living with FA? I got ill with covid in December 2020. After that, some things started to bother me more in performing my daily activities: awkwardness when walking, going down a hill or stairs, dropping things out of my hands, or spilling if I try to carry a full glass of drink. I attribute the clumsiness to fatigue from work and obligations. In September 2021, all that clumsiness became unbearable. I started to feel dizzy. I felt sick and my heart was beating fast. When I went to the hospital they didn't find anything. As I have a cousin who suffers from FA, I am going to Zagreb for a genetic test. And for my 32nd birthday came the result - confirmation of FA. Reading stories about FA, I came to my thoughts that the first symptom came to me on March 13, 2014. I was afraid to go down the stairs because there were no handrails (facebook comments reminder). I always had leg cramps. If I walked on bigger stones I really feel pain in my foot. After that, I continued to do everything normally - going to college, riding the bus, going down the stairs, climbing fast. By my twenties, I practiced majorette dance, spun in a circle, danced in heels, climbed ladders and rooftops, rolled on barrels like in a circus. Until the last two years, where I began to fear slippery, ice, snow, tiles, walking around the apartment was mandatory with adherence.

Dragana 3 Are there any others with FA in your family? I have two sisters and one brother, and they don’t have FA, thank God, but my cousin has FA.

Describe your transition from walking to walker/wheelchair. I still don't use a wheelchair. I can still walk alone on a straight road but sometimes I have to hold on to a handrail or a wall (something stable) and my husband is always close to me in case I start to lose my balance.

What do you like to do to stay active and what type of exercises work for you to stay strong? To stay active I exercise strength and balance exercises every day. I also include walks. For safety on longer walks, I always use nordic walking sticks and go with my husband.

Do you have any hobbies or special interests? I like to read a good book, play with our dogs, and play board games in good company. I like to keep my mind occupied by solving crosswords.

Dragana 3What is a good trick to make daily life easier? I walk more safely without socks - with them I have the feeling that I am sliding. I feel safer when I am barefoot or in sneakers. To complete a task, I like to focus on the problem and do things one at a time. Keep myself socially active, always think positively, avoid stressful situations or people, stay persistent in exercising, and always be sufficiently rested.

When FA gets you down, what do you think/do to feel better? My husband does not allow me to be sad. He is always there to cheer me up. I like to listen to good music. Playing with my dogs is anti-stress therapy; they are clumsy and always make me laugh. Video calls with my family (they live in another town) are full of laughter because my little niece always has some funny questions and statements.

What is one way living with FA has POSITIVELY affected your life? I started paying attention to my nutrition, eating more fresh fruits and vegetables, and doing exercises constantly. I have met some new people, and we talk and exchange experiences.

Dragana 4 What is a favorite motivational quote of yours? You glow differently when your confidence is fueled by belief in yourself instead of validation from others. Never trust your fears; they don't know your strength. Health does not always come from medicine, but sometimes it comes from a calm mind, peace in the heart, and peace in the soul. It comes from laughter and love.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? As long as you know your diagnosis, it's not the end of the world, it's just another problem in life that you have to deal with. When your problem gets a name at least you know what you have to fight against and you need to focus to find a solution without fear and panic, how to relieve yourself, and how to fight the disease. Each of us are special, and each of us has to fight against the problem of illness in a different way. Don't close yourself in your four walls; go out in society and open up to others and discuss problems and possible solutions. Stay active - be connected to people and search for information; in this day and age of technology at least it is available.

What is the first thing you want to do when a cure/treatment to FA is found? When FA is cured, I would like to start running and dancing again.

"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? That statement means I fight against FA every day and I don't let that illness beat me. I have adapted to do some things more slowly and carefully and do one thing at a time, not ten things at once.

Tell us a little more about you… I don’t like any strict diets, but I pay more attention to healthier nutrition in general. Sometimes I treat myself to the occasional cake or ice cream. I am afraid of heights and avoid walking in the dark.

Interviewed by
Interviewed by Xhesika Peza