Name: Sajmir Pjetri
Where do you call home? Burrel, Albania
Education/Career: I finished high school
Who do you live with? I live with my parents and brother. I have 3 brothers and 1 sister. 2 brothers and my sister live abroad. They are all married and blessed with children. I am a lucky and happy uncle.
What’s a typical day for you? I try to do daily exercises, read books, watch movies and play chess.
How long have you known you are living with FA? In 2013, my balance and walking got worse. I had a scan done and I found my diagnosis.
Are there any others with FA in your family? No.
Describe your transition from walking to walker/wheelchair. When I was 13-14 years old, I used to walk a lot every day, then gradually my balance got worse. At the beginning doctors said that this happened because of scoliosis. I used to wear a corset for scoliosis for nearly two years. Then my situation progressed gradually till I got the Friedreich's Ataxia diagnosis in my hands. Like everyone accepting a wheelchair, it was difficult but there is nothing you can do, except accept it.
What do you like to do to stay active and what type of exercises work for you to stay strong? I think that despite physical exercises, all we need is a good mental health. Daily exercises for gaining strength too- I do at the gym.
Do you have any hobbies or special interests? My passion is drawing… Architecture would suit me too.
What is a good trick to make daily life easier? The best attitude for me is to spend time and have fun with my family and friends. To be fair, even in difficult times.
When FA gets you down, what do you think/do to feel better? Stay alone and think POSITIVELY!
What is one way living with FA has POSITIVELY affected your life? FA has made me discover who I am and to love myself more.
What is a favorite motivational quote of yours? "Life is like chess, it can change every time."
What is a piece of advice that someone with FA has given you that encourages and inspires you? I received a lot of valuable advice and I am very thankful. In general, to be as active as we can.
What is the best advice YOU could give a person who has been newly diagnosed with FA? The same advice that I have also received: to go at physiotherapy and do daily exercises for a better mental and physical health.
What is the first thing you want to do when a cure/treatment to FA is found? I would say to FA that now it's the time of the punishment. But besides jokes, I would do what the best would be for me.
"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? FA for me is just a name of a diagnosis which makes us physically different from the other people. We are very clever and our mind abilities will never be touched. FA doesn't have me because we are very strong to fight and FA has found the toughest fighters. Together we will cure FA.
Tell us a little more about you… I like to travel and explore new places. I also like sports such as football, and chess which is more known as a mental sport.