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Ali

Ali Name: Ali

Age: 24

Where do you call home? Turkey

Education (degree(s): How will FA add to your future [career]?: My future goal is software engineering and informatics specialist.

Who do you live with? I live with my family and siblings.

What's a typical day for you? I'm usually at home, doing research during the day, watching movies, listening to music and planning what I'm going to do tomorrow. I meet my needs with the help of my family.

 

 

How long have you known you are living with FA? In 2009, when I was (12), I learned that I have FA. The diagnosis was made by genetic tests performed in Turkey/Ankara Haccatepe hospital.

Are there others in your family with FA? Yes, my brother.

Describe your transition from walking to walker/wheelchair. I was walking with support from 2012 to 2016. When the disease started to progress rapidly, I bought a power chair in 2016. I walked around the house for a while with support, then I started using a wheelchair inside the house.

What do you like to do to stay active and what type of exercises work for you to stay strong? I love researching, gaining knowledge and doing exercises that I can do. It makes me very happy to be able to do something. I try to find a solution to fix things.

Do you have any hobbies or special interests? I like simulation games, trucks, buses, cars, and I like listening to music and watching movies.

What is a good trick to make daily life easier? I have a family that believes in me, thinks about my well-being and comes to my aid.

When FA gets you down, what do you think/do to feel better? I motivate myself by saying that one day I will walk and do what I cannot do when I fall.

AliWhat is one way living with FA has POSITIVELY affected your life? I've had FA for 13 years. For 13 years I went through all kinds of pain. I have had many experiences, both physically and emotionally. I wouldn't say FA has had a positive effect on my life. I have had positive results in my life. I could do more without FA. My primary goal is to maintain my daily quality of life. My hope for the future is to be able to do my own work.

What is a favorite motivational quote of yours? I love motivational and meaningful quotes. There aren't any single ones that stand out.

What piece of advice that someone with FA has given you that encourages and inspires you? Whatever FA gives you, stay strong, don't be pessimistic, focus on what's good for you, enjoy the moment.

What is the first thing you want to do when a cure/treatment to FA is found? If there was a solution, I would first take a deep breath and be thankful, then list what I want to do.

"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? This means that FA causes physical pain but does not consume me. It's an aspect of my identity, but it certainly doesn't define me. Living with FA is not an easy task, but living with disease control is possible.



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