My History with Vision Loss

I remember when the teacher put me in the back row of the classroom because of the seating chart which dictated where each student would sit in class. It was from then on that I began to notice my visual difficulty, since I could not see the board sitting at the back of the room. I would ask the teacher, when I had to copy something important from the board, to sit closer and then everything would become clearer to me.

One day, when my father took me to school, I asked him to come up to the classroom with me and showed him where I was supposed to sit. I said: “Father, from here I cannot see anything written on the board.” He looked at me and said, “From here, daughter? It does not seem to be a very big distance”. At that moment, I was a little nervous.

Knowing that one of the manifestations of Wolfram Syndrome is loss of vision, my parents sought help. It was researching on the internet that they found the neuro-ophthalmologist doctor Alfredo Sadun in Los Angeles who had conducted a study to stabilize vision loss in patients with optic nerve atrophy. In November 2012, we went to consult with him who confirmed the bilateral optic atrophy diagnosis.

I can say that my life changed a lot after this diagnosis. At school, for example, I began to have a lot of trouble keeping up with the classes. I could not see the board, could not read the books or do the activities and quizzes on sheets with normal-sized fonts. Gradually, I adjusted, downloaded the books to my tablet, took pictures of the materials on the board to transfer to the computer at home, and my evaluations were written with larger fonts. But, despite the efforts of my teachers, the school, my parents and my own, it was not enough to help me adjust to classes with vision loss, diabetes, hearing loss, and other problems related to the syndrome. My last year was very different; I did not attend classes at Farroupilha School. I used to go to a place where I had classes with tutors every day. These classes were either using tablets or computers with big screens. It was a very good and productive year, because I did not have to make an effort to see anymore. In November 2015, when we went to Los Angeles, the researcher checked my exams and concluded that my vision loss had stabilized. With the loss of vision, during these last four years, I have learned to pay much more attention to everything I see and to find everything more beautiful and joyful, for although I see blurs on the leaves of the trees, I can transform them on beautiful green leaves.

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