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Fredson Nascimento de Santana

Fredson Nascimento de SantanaName: Fredson Nascimento de Santana

Age: 43

Where do you call home? I was born and live in Antônio Gonçalves, a small town in the countryside of Bahia State, in the Northeast of Brazil.

Education: I have a degree as a teacher’s assistant.

Who do you live with? I am single and live with my parents.

What is a typical day for you? After I finish breakfast I open my little computer store. I work in my parents garage doing personal computer maintenance.

How long have you known you are living with FA? I've been living with Friedreich's ataxia for 22 years, since I was 18. It took me more than three years to have a diagnosis, considering the time between the period when the symptoms became more apparent and the confirmation by genetic test. A clinician noticed my awkward way of walking and sent me to a neurologist.

Fredson Nascimento de SantanaAre there any others with FA in your family? Yes, my youngest sister.

Describe your transition from walking to walker/wheelchair. When I was first diagnosed my gait was weird and people thought that I was drunk. As my balance worsened, it became more and more difficult to walk without the help of someone. As I wanted to be more independent, I decided to start using the walker.

What do you like to do to stay active and what type of exercises work for you to stay strong? I really enjoy doing Pilates and other workouts like squats and abdomen strengthening.

Do you have any hobbies or special interests? I enjoy working with computer hardware and spend a lot of time seated. I also enjoy drawing and painting. You can see my work by clicking the link: http://blogdokruguer77.blogspot.com/?m=1

What is a good trick to make daily life easier? It is important to do what you like but don’t forget to exercise.

When FA gets you down, what do you think/do to feel better? I take a deep breath and try to distract my mind by something that I like to do or that makes me laugh. I also remember that God is greater than anything. Although FA is limiting me in many ways, I am a very humorous person and I enjoy watching comedies and cartoons on TV.

What is one way living with FA has POSITIVELY affected your life? I don't know how to translate that into words but I can say that I totally changed my way of doing things and dealing with my daily challenges. I learned to listen more to what other people say and to have a better diet, for example.

What is a favorite motivational quote of yours? Whenever you fall, get up and laugh at what just happened.

Fredson Nascimento de SantanaWhat is a piece of advice that someone with FA has given you that encourages and inspires you? I can't recall, I rarely talk to people who have FA.

What is the best advice you could give to a person who has been newly diagnosed with FA? “Don't worry about the future, live the present. Live each day as if it were the last”. FA is just one more problem we have to overcome. Look ahead and laugh enough to be happy.

What is the first thing you want to do when a cure/treatment is found? I would love to ride a bike again, run and play soccer.

"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? Don't give up, have faith. We have FA but still can do things even though the way we do them is a little different from the conventional. I never cared, I even laughed when people said that I was drunk.

Tell us a little more about you... I live in a small town. Before the diagnosis a lived the ordinary young man in a small town: I , rode a bicycle, played football, danced, drew and painted. I consider myself an extroverted person, with a good sense of humour and who enjoys watching comedies and cartoons on TV. I am not much into going out.


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