Name: Armin Mansory
Age: 20
Where do you call home? I live in Qazvin, Iran.
What is your education? What is a current goal you have with your education? How will FA add to your future career? I have a high school diploma and I dream of studying artificial intelligence in the future. Living with FA has made me more thoughtful about my future, and even though the road feels uncertain, I try to keep learning and growing.
Who do you live with? I live with my family.
What’s a typical day for you? Most of my day is spent at my computer—sometimes learning, sometimes working on creative projects. I try to do a bit of exercise to stay active, but honestly, many days are tough to get through.
When and how were you diagnosed? I was diagnosed at the age of 15 after years of struggling with balance and coordination. It was a hard moment that changed my life.
Are there any others with FA in your family? No, I’m the only one.
Describe an adaptation and/or transition you have had to take due to living with FA. Moving from walking to using a wheelchair was a big and emotional transition. It was difficult to accept, but it gave me more safety and independence.
What do you like to do to stay active and what type of exercises work for you to stay strong? I try to do light exercises and stretches when I have the energy. Even small movements make me feel a bit stronger.
Do you have any hobbies or special interests? I’m passionate about computers and creative work—graphic design, video editing, and anything artistic.
What is a good trick to make daily life easier? I keep things as simple and organized as possible so I don’t get overwhelmed.
When FA gets you down, what do you think/do to feel better? Honestly, it’s hard. I don’t always find a way to feel better, but talking to someone I deeply care about helps the most.
What is one way living with FA has POSITIVELY affected your life? FA has made me more patient and has taught me to appreciate the small victories in life, even when hope feels distant.
What is a favorite motivational quote of yours? “If it’s not good in the end, it’s not the end.”
What is a piece of advice that someone with FA has given you that encourages and inspires you? To keep moving forward, even when the road feels heavy and uncertain.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? It’s okay to feel scared, sad, and overwhelmed—don’t force yourself to be positive all the time. Take it one day at a time, and lean on the people who care about you.
What is the first thing you want to do when a cure/treatment to FA is found? I’d like to take a long trip with the people I love and experience life with more freedom.
“I have FA but FA doesn’t have me.” What does this statement mean to you? FA affects my body, but it doesn’t define my mind, my dreams, or who I am inside.
How do you live your life in the face of adversity? I try to focus on the small things I can control and hold on to the few bright moments, even when it’s hard to stay hopeful.
Tell us a little more about you… I’m someone who loves technology and art. I spend a lot of time learning new things and dreaming about a future in AI, even if it sometimes feels far away.
Interview by
Noah Griffith