ACCEEPTING THE DISEASE IS THE FIRST STEP FOR A GOOD SOCIAL LIFE.
When Augusto was Born, the doctors already knew it was ichthyosis. There was a psychological preparation and a sensitive approach by the professionals, who explained it was not a contagious disease. “My parents have always dealt with this. My mother, to this day, is very protective. She has always encouraged me to understand that the disease is not serious, that I would be able to interact with people, study, have a normal life”, he says.
To start attending school, the family decided to write a letter explaining the illness and gave a presentation so the children could better understand the new classmate. According to Augusto, despite having some respect, he was more with himself. Nobody teased him, but he would not seek contact either. “There was always someone who sometimes got rough, invented a nickname to make fun of my appearance”, he recalls, who was a sensitive teenager by the age of 15.
As time went by, Augusto started to reflect on everything he heard from his mother. And then something has come up: he needed a way to defend himself, because deep down he knew she would not be around all the time. “I started to put down barriers and interact with the other students, showing that what I ha does not make me any different from anybody. The ability the others have I have too. So I started to conquer my space”, he says.
The routine of the 24-year-old young man has activities as any other person of his age. Augusto is a computer technician – he sets up and maintains computers. In his free time, he works out. He noticed that the practice has helped to make his body more flexible – he says he has even evolved emotionally. Besides, he likes to express what he feels in drawings which are in some notebooks.
However, even with this awareness, Augusto has heard things such as “Have you ever lookd at yourself in the mirror?” “Have you seen how different you are?” The answer to those questions was unexpected to those who dared to contest: “I am a person, like any other, seeking a better quality of life to be fine with myself and be always around”.
Today, Augusto is also requested by parents and young people who has just began to face the disease and do not know how to deal with it the news. “My intention is to take my knowledge to those who need it. I try to show that it is not the end of the world from that discovery”, he says. One of the factors which differentiates Augusto’s story from those of other people who also have some type of genodermatosis was the support from the family. “First, I had to accept myself, because it is a sisease I am going to take with me for the rest of my life. I just have to take care. I do not have to be a victim of the world”.