My name is Antônio Maranhão Calmon. I am 42 years old and currently live in the countryside, 3 hours away from Sao Paulo, Brazil.
My first symptoms appeared more strongly when I was 30 years old but my diagnosis came seven years later.
Despite the late diagnosis, I am now aware that some of the symptoms appeared in my childhood. I clearly remember a volleyball match with my friends in which I felt something different in my motor coordination.
When I was a teenager I also had symptoms like lack of balance but I thought it was a problem with my knee caps, which were operated soon later. I had never imagined that I would be diagnosed with a progressively disabling genetic disease years later.
At the time of my diagnosis, I was an airline pilot and very passionate about my job. It was a shocking surprise to get the diagnosis and have to give up my professional dreams but today, having the support of my family and my girlfriend - also a FA'er- I know that it is still possible to be happy in spite of the diagnosis. I'm still able to walk and the daily practice of physical exercises is my way to fight the disease and reduce its progression. I live alone and do all the house chores, including mowing the lawn. My utility bill is very low because the amount of my sweat is enough to water the entire yard. :)
Last year I was part of a clinical trial with omaveloxolone in Philadelphia, and I'm happy to have been able to collaborate with FARA's effort to find a treatment that can treat FA.
I am currently focused on helping the international effort for registration in the Friedreich's Ataxia Global Registry because I believe that it will be able to attract more pharma's interested in sponsoring future treatments for FA.