Name: Dante Canuto dos Anjos Filho
Age: 39 years old
Where do you call home? I live in Vitória de Santo Antão, an inner-city in Pernambuco, northeast Brazil.
Education: I went to Veterinary school for four semesters.
What is a typical day for you? Like everybody else, my routine during the pandemics has little to do with what used to be my routine. I stay home in front of the computer and play games that help me to train my memory and the motor coordination of my upper limbs. I also spend a good portion of my time listening to Brazilian rock-and-roll from the 80s and 90s. Before the Covid-19 I used to spend my time doing my collection of therapies: physical therapy, hydrotherapy, speech therapy, and occupational therapy.
How long have you known you are living with FA? When and how were you diagnosed? The first noticeable symptom of FA appeared when I was 16. I started feeling light-headed, exhausted after walking long distances, and a little disoriented about feeling my body in spatial terms. I was taken to two neurologists and did some lab tests but nothing was found. Shortly after my sister, who is two years younger than me, started feeling the same things. At that time my mother was already living in the US and she took me to a neurologist in New York City but no answer was given to my condition. I came back to Brazil without knowing what I had. Ten years later my sister went to the same process in the US but at that time the DNA sequence was already in place. She returned to Brazil with the diagnosis of Friedreich’s Ataxia. Even though I didn’t have a diagnosis for a long period of time I kept doing exercises in the pool and bodybuilding.
Are there any others with FA in your family? Yes, my sister. Two of the three siblings have FA.
What do you like to do to stay active and what type of exercises work for you to stay strong? I am confined to my house but still try to keep up the therapies I need the most. For example, after so many years of doing, I have memorized a good number of speech and respiratory exercises. When I transfer from chair to my bed I stand up for some time to give some strength to my legs.
Do you have any hobbies or special interests? My special interest is music!
What is a good trick to make daily life easier? I enjoy my routines of games, listening to music and the behavior - mostly good but sometimes bad :) - of my two boys. Last but not least, the company and support of my wife.
When FA gets you down, what do you think/do to feel better? Sometimes I think about my condition and compare it with other people, like my sister, who is in a worse condition than mine. She has lost the ability to speak, only uncoordinated sounds that nobody understands come out of her mouth. I open my heart to God, I converse with Him, and think that the good of the disease was to put me close to religion. I wish all FAers to be patient, our journey makes us stronger.
What is the best advice YOU could give to a person who has been newly diagnosed with FA? Be calm, no worries, every problem has a solution, science and technology are very advanced nowadays.
What is the first thing you want to do when a cure/treatment to FA is found? I don’t think about a cure all the time but if it happened, I would love to walk on the beach right by the water feeling the waves breaking on my feet.
"I have FA, but FA doesn't have me." What does this statement mean to you? I think about FA as one more disease that brings limitations but we can manage them. I do whatever I can, in my own way, and don’t waste any opportunity to enjoy family and friends.
Tell us more about you. I belong to an association of handicapped people in my hometown and now I am a member of the FA international community thanks to FARA. I am very grateful for the opportunity of “meeting the community”. I also am very grateful to my mother, who always looking for new possibilities of treatment, and to my wife and kids, for all the love and support.