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Leila Filgueiras

Sandra Johnson Name: Leila Filgueiras

Age: 42

Where do you call home? I live in Feira de Santana, Bahia, in northeast Brazil.

Education/Career: I have finished high school. I am waiting for better times, including a financially good time, to finish college.

Who do you live with? I am divorced and live with my daughter, who is my only child.

What is a typical day for you? Even though I stay home most of the time, my days are really busy. I do all the housework and tutor kids from 4 to 12 years old. I still do hydrotherapy classes but this routine had to change in some ways due to the pandemic. I can’t wait to go back to normal life.

 

 

How long have you known you are living with FA? I was only diagnosed with FA 10 years ago, when I was 32 years old.

Are there any others with FA in your family? I had a brother with FA four years younger than me. He passed away this year.

Describe your transition from walking to walker/wheelchair. Until five years ago, I was still ambulatory but had to start using a walker after a fall.

What do you like to do to stay active and what type of exercises work for you to stay strong? I try to live a normal life as much as I can; that's my mantra. And my hydro therapy classes are part of it.

Do you have any hobbies or special interests? I love to travel, see new places, and learn about new things. I hope I can do that again soon.

Sandra Johnson What is a good trick to make daily life easier? I do a lot of meditation and other similar things. With a healthier mind my body reacts better.

When FA gets you down, what do you think/do to feel better? I try not to put myself down and live my life in an adapted way, even with all the difficulties I encounter along the way.

What is one way living with FA has POSITIVELY affected your life? FA made me grow up and see life in a different way, in all its possibilities. It showed me that we can live and adapt, regardless of the problem. We are alive.

What is a favorite motivational quote of yours? "The limit is within your mind. Don't limit yourself. Allow yourself to do what your heart asks for!"

What is a piece of advice that someone with FA has given you that encourages and inspires you? I often give advice to patients at Sarah Rehab, which I meet in the waiting room and I think that it happens because I'm more open-minded and more accepting of the disease than they are. In fact, I still haven't found anyone to give me positive advice.

What is the best advice YOU could give a person who has been newly diagnosed with FA? Live life to the fullest. We can do everything, no matter our limitations. Don't give up, have faith in God and trust science.

What is the first thing you want to do when a cure/treatment is found? I want to go back to teaching college and continue to develop my professional skills. I want to do what I love, without discrimination or prejudice. Teaching is my passion.

"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? This means that I can live my life normally and be happy regardless of Friedreich's Ataxia, as I am stronger than it. This disease won't beat me!

Tell us a little more about you… I use a walker to get around long distances, I have a normal life, even though I'm facing great difficulties. I try to keep my mind healthy to have my body stable, I fight to make my dreams come true and I'm not afraid of new challenges. If I'm going to live, I'll live it in an adapted way, of course, until the day I can. Fear and regret are not my motto.


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