My name is Roger, and I’m from Igualada (Barcelona).
My story began when my parents discovered that I didn’t react to sounds at all as a baby, and the result was a diagnosis of profound deafness from birth. I used hearing aids that fit into the ear canal, but they didn’t help me either. At that time, cochlear implants were just emerging, and not much was known about them. My parents sought options, and the AICE federation was the organization that informed them about the possibilities, introducing cochlear implants as a solution.
When I was seven years old, I underwent surgery for my first cochlear implant (on the left side). I remember discovering the first sounds of my life—it was a lot of work to identify them all the time. I went through countless hours of therapy with speech therapists, who were a tremendous help in reaching the level of communication and independence I have today. Even now, at 33, I continue improving, though since I was 16 or 17, I’ve been learning on my own without speech therapists. What helps a lot is having a strong desire to keep progressing.
Shortly after getting my first cochlear implant, I realized that other people could do many things at night without any problems, whereas I struggled—I couldn’t see at all. In fact, I’ve never had good night vision or vision in low-light environments. Over the years, I began losing my visual field, and I noticed it a lot because I played a lot of tennis, where it’s crucial to see the ball clearly. Despite this, I didn’t stop trying many different sports like basketball, cycling alone, skiing, and more. By the time I was 17 or 18, the vision loss had become much more noticeable. It made me think a lot about getting a second cochlear implant to improve environmental sound perception and communication. With only one processor, I felt a bit limited in making further progress. The biggest leap came when I got my second implant on the right side at the age of 22.
When it comes to balance, I’ve never been a star, so to speak. But all the sports I’ve practiced since I was little have given me many opportunities to learn better control and how to fall properly without hurting myself. These days, I train every day, and I’ve noticed significant improvements and reflexes that have miraculously helped me avoid major falls. Even so, I’ve had countless falls but always got back up again. It’s not easy, but it has always been worth it.
It was only a few years ago that I discovered I had Usher Syndrome Type 1B, thanks to genetic testing. That’s why I’m now part of this community. I came across a news story about Leo from Deltebre. I found a way to contact them via email, and they responded immediately. From there, I learned for the first time that there are many people with Usher Syndrome—until then, I hadn’t met anyone with it.
As you can see, when cochlear implants were so new, there was very little information about retinitis pigmentosa and how Usher Syndrome affects people. But now, things have advanced so much! This progress is thanks to research, technological improvements, and organizations like Save Sight Now Europe that are tirelessly fighting for change.
Without a fight, there are no results. So, full speed ahead without stopping!