Name: Leticia Lima Mota
Age: 24 years old
Where do you live? Itabaiana, Sergipe in Brazil
Education: I’m finishing my degree in nutrition (I’ve been saying this for a long time, but now it’s really true)
What is your relationship status? Do you have children? Who do you live with? I’m single. I don’t have children. I live with my mother and my younger brother.
What is a typical day for you? Since I’m almost done with my degree, I no longer have any face-to-face activities at the university, which used to take up most of my time. I currently stay at home almost all day, resting (a lot), working on my final project – to finally graduate, reading, listening to music… I usually only go out to do physiotherapy twice a week and to speech therapy once a week.
How long have you known you were living with FA? I was diagnosed 8 years ago, but I have been showing symptoms of FA for 20 years. I went to many doctors and had many tests before reaching the diagnosis, but it was only after 12 years that I found a doctor who was familiar with FA who knew that my symptoms were characteristic of the disease and referred me to do the right test.
Is there anyone in your family with FA? Yes, my younger brother (diagnosed a few months after me).
Describe your transition from walking on your own to using a walker/wheelchair. The transition was terrible. I’m starting to justify myself: I was a teenager. I hated the idea of having to use a wheelchair and I tried to postpone the transition as much as possible, even though I suffered a lot (physically, really) to keep walking. I also suffered emotionally for a long time because I couldn’t walk anymore. Adolescence, right?
What do you like to do to stay active and what types of exercises work for you to stay strong? I only do physiotherapy.
Do you have any hobbies or special interests? I like to study, eat (laughs), read, listen to music and watch movies.
What is a good trick to make daily life easier? Focus on doing what you can in the moment.
When FA gets you down, what do you think/do to feel better? Nothing? I guess I’ll just wait.
How has FA POSITIVELY affected your life? I’ve met wonderful people. And I think I learned to have one of my greatest qualities — patience — because FA demanded it from me from an early age.
What is the best advice you could give to someone who has recently been diagnosed with FA? You are not alone.
What is the first thing you want to do when a cure/treatment for FA is found? I want to do several things: continue studying, be more physically active, travel, go to shows… But I think the first thing will be to eat couscous, which I can’t do without choking a lot, so I had to stop.
“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? I really like this phrase. I apply it to my life. Most of the time I’m hoping for the best and doing what I can to achieve it.
Interview by
Natache Iamaya Gomes