Belén Martín Avilés has lived with FA since she was 9-years-old, but she hasn’t let that stop her from becoming a medical researcher. Currently, she is 23 and studying in Southern Spain, but her love of travel takes her to different cities and countries. She credits being diagnosed with FA at a young age with inspiring her studies, desire for adventure, and ability to see the possibilities of life. Her daily exercise routine is something we can all aspire to, but all that smart, tenacious Spanish flair has me motivated.
Name: Belén
Age: 23
Where do you call home? Southern Spain.
Education: University degree of Medicine and Research. I’m in the last year of my degree, doing my final project and practicing in a laboratory to get work experience.
Who do you live with? I live in a house with my father, my mother and my older brother.
What’s a typical day for you? Currently, my days are busy. I wake up very early, like 6 or 7 a.m. because I have to spend all morning in the laboratory doing different experiments with nanoparticles. Then, I have lunch with my classmates. After that, I go to English classes and go to the gym to do exercise. Finally, I come home at 9 p.m. and I have dinner with my family.
How long have you known you are living with FA? I was diagnosed with FA when I was 9 years old..
Are there any others with FA in your family? No.
Describe your transition from walking to walker/wheelchair. I needed to use the wheelchair 6 years ago; before that, I always needed some help from my friends and family to walk. I needed more and more assistance so I understood that using a wheelchair would be the best option. It was a hard and complicated process for me because, as a young person, I wasn’t prepared for it.
What do you like to do to stay active and what type of exercises work for you to stay strong? I like to stay active because I feel better with myself. I go to see my physiotherapist 2 days per week, I try to do exercises everyday –including on the weekend. For specific exercises, I swim in a swimming pool.
Do you have any hobbies or special interests? I like listening to music, watching films, and other things like young people do. One of my special interests is to travel and visit different countries and learn about their culture.
When FA gets you down, what do you think/do to feel better? I think growing up with this disease makes it easier to deal with FA worsening because when you were a child, you can see the world in a different point of view. For example, I loved to go to hospitals because I had to travel to other cities and I didn’t have to go to school some days.
What is one way living with FA has POSITIVELY affected your life? FA gives me a deep interest and passion for research treatments or cures for different diseases. Also, it gives me the ability to adapt to a new situation.
What is a favorite motivational quote of yours? “Intelligence is the ability to adapt to changes” and “Happiness is not a destination, is a way of life”
What is the best advice YOU could give to a person who has been newly diagnosed with FA? I would probably tell her/him that they should follow her/his interests with normality; only you can decide your limits.
What is the first thing you want to do when a cure/treatment to FA is found? I don´t know… if I could walk alone, I would like to take a walk on the beach only with my thoughts because never have I ever done that before.
“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?: That means to me that you are diagnosed with FA and you have to accept that, but you can’t let it control your life or decide for you.
Interview by
Shelby Wright