FARA's main asset in the journey toward treatments and a cure is the FA community. The community is needed to participate in the FA longitudinal study to collect data on the progression of the disease, provide blood samples for studies, participate in clinical drug trials, provide their perspective in media stories, labs, and pharma companies, and to continue pushing the effort toward the ultimate goal.
The global FA community continues to grow with partners in Canada, Europe, the middle east, and Australia. The sun literally never sets on FA research and awareness.
Brazil has joined the global FA community with multiple efforts. Dr Marcondes Franca, Jr. at University of Campinas in Sao Paulo Brazil is a neurologist who provides clinical care and is committed to research. He has been doing natural history exams, neuro and cardiac MRI research, hearing testsand is working with FARA to establish a Collaborative Clinical Research Network (CCRN) site in Brazil. All of this activity has peaked the interest of the Brazilian FA community and they are getting organized for the effort.
They have a growing Facebook group that builds as word spreads, and they have put a lot of effort into getting people entered in the FARA Patient Registry (curefa.org/registry), thanks to Amalia Maranhao who is committed to raising awareness and advancing advocacy efforts for the FA community.
They also established a blog of FA posts translated into Portuguese: faataxia.blogspot.com.
One of the most visible leaders in the Brazilian FA community is Natache Iamaya who is a fiercely independent advocate for FA research and social justice. Natache recently won a national contest – Muse of Rio de Janro - and has been featured in several media outlets in Brazil as she spreads the word about research and her fight against prejudice.
This interview was translated from English to Portuguese and then the answers we translated from Portuguese back to English.
How old are you?
I am 32 and have had FA symptoms since I was 14.
Where do you live?
In Brazil, more precisely in Rio de Janeiro, the land of Girl from Ipanema, and a city of lush curves, an extremely intense nature and heat burning, comparable to the hell of a crazy passion. Rio's beaches are the dream of all the “cariocas”(people that live in Rio)c after a grueling week of work. Rio also means samba, a wonderful rhythm! Our people [are] wise enough to temper the hardness of life with a lot of joy.
I read that you are in law school. How long were you in school?
Sometime after my diagnosis I went through a period of apathy and depression. That’s when I really felt the pinch of prejudice. My clumsy walk caused by the loss of movements made people think that I was either drunk or high. For a period of time I didn’t go out and stopped talking to people. In order to get away from that state of mind I applied for Law school and started my course. I really enjoyed college but had to go on a leave of absence when mobility became a real problem. At the time I was 25, just started using a wheel chair and quit my studies so that I could focus my energy and make some money to pay for treatments. I started working after I entered college, when I was in a wheelchair. I was invited to do fashion modeling jobs adapted to my condition.
When were you diagnosed with FA?
At 14 I noticed that something was wrong. I began to stumble, to twist my foot. I also felt weak and had difficulty in coordinating my hands. At 19, after several doctors visits and exams, a genetic test brought the diagnosis of Friedreich's ataxia. Before my illness came out I was extremely independent and organized. I did sports, loved to dance, even stole my mother’s stiletto’s to go out. I also had an active life: school, many friends, a true chatty cathy who used to attend as many social events as possible. Suddenly the first signs that something was wrong with me began to appear: a clumsy gait, lack of movements coordination, inability to hold things and slow and failing voice. I continued practicing sports, focusing even more on swimming. After all, I felt "normal" and independent in the water.
How many other people in do you know in Brazil who have FA?
A couple of FA patients and their families formed an exclusive group in Facebook to discuss possible treatments in the pipeline and request clear public policies about FA treatment. In four months the group has already enlisted almost 80 new Brazilian FA’ers in FARA’s registry. The group actively exchange information and learn about the syndrome. Another goal of the group is to have an informal registry of FA’ers in Brazil, which will facilitate the recruitment of volunteers for future clinical trials and bring public awareness about the disease. In a rough estimate there are about 130 cases in Brazil, but the number of underreported cases is much higher than that figure.
How do you keep in touch with others in Brazil who have FA?
The most common and effective forms of contact are the online hangouts and Facebook.
Do you believe that soon there will be treatments and a cure for FA?
Of course I do. I'm sure that, soon, thanks to the advances of science, I will be standing again, doing many things that are kept in the back of my memory like going dancing madly until the sun comes up ... "in stilletos"! Meanwhile, I’ll keep doing alternative treatments that improve my quality of life and keep me moving forward.
What do you like to do in your spare time?
I like a lot of weight lifting. My physical gain is proportional to my mental gain. I also like to feed my vanity like going to a beauty parlor or buying a new outfit . I also enjoy going to the beach or out at night, for dinner or music performances. For now I go out mostly to listen to music but hopefully soon I am going to go dancing too!
Tell me about your fight against prejudice and stereotypes. Why is it so important to you?
I think this fight is not only mine. The Muse’s contest goal was to support freedom for our bodies and break the pageant’s stereotypes. All sorts of prejudices reach everybody in some way, either in a very narrow vision of aesthetic concept or in any other form of discrimination, of intolerance to the “unconventional” or “different”. I do whatever I can to change that mindset. In my case, with the limitations caused by Friedreich's Ataxia, people tend to see and classify me as poor thing. I work out all the time, I swim, I go to the beach. I like to sleep in the house of friends. I travel and do everything. Things that people think I can not do. Despite the limitations imposed by the body, that does not stop me from doing anything I want. I want to show that disabled people don’t deserve pity and are capable of much more than people usually imagine.
How will Muse of Rio help you in the fight against prejudice and stereotypes?
The competition I won was extremely important for gathering public attention to the disabled. In a way it helped give some visibility to Friedreich's ataxia. It was possible to show that people with a physical disability are also beautiful and can be part of the fashion world like anyone.
What are your plans for the future?
I plan to live one day at a time. I try to live life, I do not let it just happen. The same way I make my choices and consciously accept all the consequences.