Name:Vincente Salgado Pires
Age: 27
Where do you call home? Rio de Janeiro, Brasil
Education/Career: Bachelor’s degree in Biomedical Sciences, Master’s degree in Molecular Biology, and a current PhD student.
What’s a typical day for you? Before the quarantine, I used to wake up at 7:30 am and get ready to go to the lab. I typically would stay there until 4 pm, with classes in between. I did pilates three times a week. On the weekends, I used to meet friends and family.
How long have you known you are living with FA? The first symptoms started appearing at age 15, but I was officially diagnosed at 18.
Are there any others with FA in your family? No.
Describe your transition from walking to walker/wheelchair. The transition to the wheelchair was quite tough at first. The acceptance wasn’t mentally and emotionally easy, but with the help of my family and friends, I pulled through. The adaptations that I found most useful were on the bathroom, in the form of assistance poles.
What do you like to do to stay active and what type of exercises work for you to stay strong? As I said, I do pilates and the instructor doesn’t make it too easy, so that helps me to stay strong.
Do you have any hobbies or special interests? I really LOVE reading. I do also enjoy playing video games.
When FA gets you down, what do you think/do to feel better? My way of dealing with being down because of FA, or anything honestly, is being productive and seeing the work I’ve done..
What is one way living with FA has POSITIVELY affected your life? My outlook on the value of life improved. Also, I am generally more empathetic.
What is the best advice YOU could give a person who has been newly diagnosed with FA? Plan your steps in life, but don’t limit yourself. It’s surely not easy living with FA, but you are capable of impacting the world.
“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? The plans I have for my life account for the challenges of being with FA. I work with bioinformatics, so the FA doesn’t impact my planned career path. But, I cannot be summarized by the FA.
Interview by
Christin Haun