Name: Eduardo Venâncio
Age: 36
Where do you call home? Curitiba, Brazil.
Education degree(s): Mechanical engineering and MBA
Who do you live with? I live by myself, thanks to innovative business models and technologies—something I couldn't even imagine a few years back. The place where I live has staff shared with a hotel, so I get daily housekeeping—lunch, dinner, groceries, and laundry delivered at my door. And I have friends and family that I can call if an emergency arises.
How long have you known you are living with FA? (When and how were you diagnosed?) About 12 years now. Before that, between the first symptoms (poor balance, needed handrails in stairs) and the precise diagnostic around ten years have passed.
Are there any others with FA in your family? No. My sister and two brothers don't have FA.
Describe your transition from walking to walker/wheelchair. I started using a walking stick in 2010 before actually needing it to walk. I was going to corporate training in the UK and wanted to avoid being mistaken for someone drunk in formal environments. It worked. By seeing the stick, people would offer help or ignore me instead of giving me creeped looks. Years passed, and a walking stick was not good anymore. I tripped a lot and was always tense, looking at the floor, trying not to fall. So in 2015, I got a walker. In 2017 I broke a leg and had to start using a wheelchair. It was a blessing in disguise. I no longer had to be looking at the floor all the time. I felt more relaxed, safe, and confidant to go around
What do you like to do to stay active and what type of exercises work for you to stay strong? Weight lifting, static bike, and stretching.
Do you have any hobbies or special interests? Archery, board games, and making time-lapse videos.
What is a good trick to make daily life easier? Have everything I will need at reach, to prevent having to walk around. For example, keeping all the clothes, I am going to wear in the morning near the bed.
When FA gets you down, what do you think/do to feel better? I focus on the books I am writing. I think the best parts of those stories were written with tears in my eyes.
What is one way living with FA has POSITIVELY affected your life? I became good at planning because I don't have much room to improvise. I became focused and creative since creativity is needed to overcome every sort of daily challenges.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Do what you can to improve your life and let go of what you can't. As simple as it may sound, it is a liberating mindset.
What is the first thing you want to do when a cure/treatment to FA is found? Run like Forrest Gump.
"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? Having a purpose allows us to move towards a goal, regardless of adversities. Purpose embeds life with the understanding that there are more important things than our health.
This interview was translated into English from Portuguese.
