Name: Ana Clara Passos
Where do you call home? A town in the state of Rio de Janeiro.
Education/Career: I'm in the 2nd year of high school and intend to go to college and study Biomedical Science. FA is just a detail.
Who do you live with? I live with my mother and siblings.
What is a typical day for you? My typical day is all about reading, exercising and studying.
How long have you known you are living with FA? I was diagnosed with FA almost four years ago through a genetic panel carried out in Rio de Janeiro city.
Are there any others with FA in your family? No.
Describe an adaptation and/or transition you have had to take due to living with FA. I haven’t gotten to that point yet, but I have my challenges with mobility. When I was 14, I started walking while leaning on someone because of the imbalance and lack of coordination in my legs. I try as much as I can to keep myself upright because I think the wheelchair can weaken my muscles and bones!
What do you like to do to stay active and what type of exercises work for you to stay strong? I regularly do stretching, physical therapy and hydrotherapy.
Do you have any hobbies or special interests? I enjoy playing cards with friends or having a good conversation.
What is a good trick to make daily life easier? My trick is to live a simple life and have simple habits.
When FA gets you down, what do you think/do to feel better? When I am down I start sweating cold and often can't breathe. After a few minutes I drink some water and try to be more careful so that it does not happen again.
What is one way living with FA has POSITIVELY affected your life? I learned to appreciate the simpler things in life.
What is a favorite motivational quote of yours? John 16:33 “I have told you these things, so that in me you may have peace. ... In this world you will have trouble. ... But take heart! I have overcome the world.”
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Go ahead, we are on this journey together. Never lose focus, live intensely!
What is the first thing you want to do when a cure/treatment to FA is found? Thank God for the opportunity.
"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? Even in the face of so many difficulties, I continue with determination and courage to strive and thrive!
Tell us a little more about yourself... I am happy despite everything, I live one day at a time, with unshakable hope and faith and always believing that tomorrow will be better than today!