Name: Şirin
Age: 21
Where do you call home? Niğde,Turkey
Education (degree(s): -OR- What is a current goal you have with your education? How will FA add to your future [career]? : I met Fa at the university and went to open teaching in the 2nd grade, it made me very sad, I only go to university for exams, now I’m studying 2 universities / child development and health management. My current goal is to become a civil servant.
Who do you live with? I live with my family.
What’s a typical day for you? During the day I study for university exams. I study for civil service exams in the evenings. I play sports. I try to learn a new language. I attend trainings on social media and watch movies in my spare time.
How long have you known you are living with FA? Diagnosed in 2018. I was 18 years old.
Are there any others with FA in your family? Yes, my sister.
Describe your transition from walking to walker/wheelchair. I’m currently walking holding a parent’s arm.
What do you like to do to stay active and what type of exercises work for you to stay strong? I do balance exercises and weight my feet on the treadmill to strengthen my legs.
Do you have any hobbies or special interests? My hobbies are traveling, watching movies, social media, meeting new people, learning new cultures, paintings, taking care of children.
What is a good trick to make daily life easier? Starting the day positive and believing that good things will happen soon.
When FA gets you down, what do you think/do to feel better? To think that every bad thing has an end and I always say to myself that cacti bloom too. We are like a cactus, but if we are patient, we will bloom.
What is one way living with FA has POSITIVELY affected your life? At first it was very depressed, I was crying all the time but I try to ignore it now.
What is a favorite motivational quote of yours? I believe that in the future there will be a cure for this disease.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Never lose hope, live happily.
Interview by
Xhesika Peza