My name is Natache Iamaya, I'm Brazilian and live in Rio de Janeiro. At the age of 13, I began to notice something in my coordination and balance and at age 18, after several inconclusive tests, I was diagnosed with Friedreich's Ataxia.
When the first symptoms became visible, I noticed people staring of me out of curiosity. Later in college, I continued to feel prejudice and I had to face a country unprepared to accept handicapped people. These events added to all the dreams and expectations of a young woman eager to discover things and find acceptance, bewildered me and made me isolate myself in a cocoon of sadness, fear, and shame for what was happening. It took me a while but I turned around and I realized that my happiness depends primarily on me and how important it is to have determination and courage to keep moving forward.
Nowadays, in spite of a Stage 5 progression, I keep my routine of physical exercises and encourage other patients to do the same. I also comfort myself with the affection and understanding of my loved ones. What also motivates me is the positive attitude on the part of my sweetheart, also an FA patient.
Soon after I was diagnosed I tried to learn as much as possible about the genetic mutation my body has hosted. What I learned was enough to help clarify doubts of other patients and their families. I also engaged in the idea of increasing awareness about FA and how patients can contribute to boosting research. I am glad that I could contribute with the FA Registry in Brazil and with the FA Global Registry bringing up people who were my followers on my
online postings.
For a period of time, I worked a photographic model and was able to use all the opportunities of media exposure to talk about the disease and make patients visible to the media and to people in general. At the age of 36, already in the wheelchair and need help in almost all activities, I don't give up. Recruiting new FA'ers is my mantra and I try to do that every day because I truly believe that "together we will cure FA!"
