Sule 1 Name: Sule

Age: 24 years old

Where do you call home? I live in Kayseri, Turkey.

Education (degree(s): I have a license in classroom teaching. I need to take one more exam for my job. I am also attending school.

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

What's a typical day for you? I work all day long. First work, then studying. I admit it’s as tiring as it sounds, but I like to keep myself active.

How long have you known you are living with FA? I’ve know I had FA for a long time. My diagnosis was made when I was 19.

Sule 2 Are there any others with FA in your family? All of us, three sisters have FA, and we are all FA Fighters. My eldest sister is ten years older than me, and we have known about FA since the moment she was diagnosed.

Describe your transition from walking to walker/wheelchair. Eight months ago, I was walking long distances with someone, and at short distances with support of a wall. But I had a car accident and broke my right kneecap, severed my ACL, and damaged my lateral ligaments. That’s why I had 2 surgeries, and now use a walker when I am out.

What do you like to do to stay active and what type of exercises work for you to stay strong? I’m in physical therapy all the time and walking.

What is a good trick to make daily life easier? My trick is to keep myself happy all the time because I collapse when I get sad, angry or have negative feelings. I try to stay as active as possible in life, without putting myself in danger.

Sule 3 When FA gets you down, what do you think/do to feel better? Nothing. Because I need to fall sometimes, for the best feelings, situations.

What is one way living with FA has POSITIVELY affected your life? I don’t know if FA has positive effects, but no matter how old you are people treat you like a baby. It’s nice sometimes

"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’m still struggling like everyone. I focus on doing the best at my job.

What is the best advice YOU could give to a person who has been newly diagnosed with FA? For those who have just met FA; Don’t worry nobody wanted to have it. You are not alone, as me and my other friends are always here to talk, laugh or cry.

Tell us a little more about you… I’m still chasing my dreams. I’m not going to let FA stop me, unless I want it. And little secret between you and me. I NEVER WANT IT.

Interviewed by
Interviewed by Xhesika Peza