Name: Márcia Ferreira Galvão
Age: 59
Where do you call home? Poços de Caldas, Estado de Minas Gerais State, in the southeast part of Brazil
Education degree: I graduated in 1982 and have a degree in Brazilian Language and Literature.
Who do you live with? I am divorced with two children - 32 and 27 years old - and live with my ex-husband, who is very helpful.
What's a typical day for you? I read a lot, don't watch conventional TV (only movies and series I download on my computer. My routine includes personal hygiene in the morning, as I need help with everything. In the afternoon I use the computer to follow the news, entertainment and bank services or whatever else is needed.
How long have you known you are living with FA? My first symptoms appeared when I was 17 years old but only when I was 45 I had the clinical and genetic test confirmation of Friedreich's Ataxia.
Are there any other with FA in your family? No.
Describe your transition from walking to walker/wheelchair. I walked normally until I was 17 years old when I cut my foot. I started to experience some difficulty, especially when running and started to think that it came from the cut on my foot. It took me a while to realize that it wasn't the real cause of my problems. I walked with progressive difficulty until the delivery of my second baby when the situation got worse. By then, my then-husband and I decided that it would be better to use the wheelchair. I was 32 years old at that time.
What do you like to do to stay active and what type of exercises work for you to stay strong? I have physical therapy sessions three times a week.
Do you have any hobbies or special interests? I am an avid reader and I also enjoy watching movies and series on my computer.
What's a good trick to make daily life easier? I good trick for me is to do enough things to keep my mind busy.
When FA gets you down, what do you think/do to feel better? I think that people still need me, my common sense and practicality, and especially my children.
What is one way living with FA has POSITIVELY affected your life? FA make me more stable and patient!
What is your favorite motivational quote? I think I have the opportunity to live only one life. So, I teach myself to be happy and accept joy and gusto the gift of "existing."
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Love yourself as you are and not as you would like to be!
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Feel alive and always live as if it were your last day.
What is the first thing you want to do when a cure/treatment to FA is found? I want to dance and to travel.
"I have FA, but FA doesn't have me." What does this statement mean to you? Never give up on living. This disease is just a difficulty that you have. Don't let yourself get into despair!
Tell us a little more about yourself. I am a determined, independent, and rational person, and very early on, I fell in love with my ex-husband. We dated for 12 years and got married because of love (a lot of love). I was very happy in my marriage, even with my husband having to go to work every day. I have always given my best for the sake of my family, for the stability of my marriage, and I think it made me a stronger person. It is great to be alive and happy!
