Making rare diseases visible: Alessandro Coppola's commitment

A university student and activist, he talks about living with Usher syndrome and the importance of raising awareness to counter isolation and stereotypes.

Alessandro Coppola, 23, from Naples, is currently in his second year of a Communication Sciences degree. As a child he was energetic, exuberant and always on the move, but behind that liveliness there was a difficulty.

'At nursery school,' Alessandro recalls, 'my teacher Lucia would call me and I would not turn around. I communicated differently from the other children. At the age of four, during an appointment at Bambino Gesù Children's Hospital in Rome, I was diagnosed with bilateral sensorineural hearing loss. From that day, a long journey began, involving surgery, check-ups and speech therapy. Today I hear only through my right ear, thanks to a hearing aid I have worn for 19 years, which has become my companion in life.'

School and bullying

'School has always been a constant in my life. I never missed a day, not even after surgery. I would go back the day after being discharged, still wearing the post-operative bandage on my head. I knew I was starting one step behind my classmates, so I could not afford to give up on school. Bullying also began in primary school. Some children called me "Amplifon" or "Deaf". They told me I should die and tried to pull off my hearing aid. For a long time, I chose to hide. My defence became a hooded sweatshirt, which I wore all the time, even in summer and under the sun, because I wanted to hide the hearing aid. Today I recognise the paradox: I was hiding the very thing that gave me an opportunity in life, allowing me to speak, study and communicate. When you are bullied, you feel as though something is wrong with you. I had not chosen to be Deaf, yet I began to convince myself that I was the problem. Teacher Angela, another fundamental person in my journey, was the one who noticed how much I was suffering. She took me around the classrooms so I could identify the children who had been targeting me.'

The family's trust

'If I am the person I am today, much of the credit belongs to my family: my mother Maria Pia, my father Umberto and my sister Erica, who shared in the sacrifices imposed by my journey. My parents never treated me as fragile. Quite the opposite. When several people advised them to send me to a school for Deaf children, my mother chose mainstream public school and wanted me to live like all the other children. She always encouraged me to "do more".'

The first signs and the diagnosis that changed everything

'One day in August I found myself with my back to the tracks in a metro station. To this day I do not know how I managed to avoid being hit by the approaching train. It was the first warning sign. In the months that followed, I kept bumping into posts at stations. In November 2019 came the diagnosis that would completely change my life and my plans: Usher syndrome type 2, a rare, degenerative genetic condition affecting hearing and vision. In type 2, deafness appears in childhood and visual problems develop during adolescence. The diagnosis explained everything. Today I no longer have peripheral vision, only central vision. My sight is blurred and in the dark, or where there is very little light, I can barely see. I had always imagined finishing high school and then going abroad to study Economics and Business. Instead, at sixteen, after building my balance through sport, basketball, study, travel and club nights that I organised as a promoter, I found myself fighting a degenerative disease that can lead to blindness. I loved being around people, meeting new people and building relationships. Everything I had built up to that point no longer existed in the same way: relationships change and many people disappear.'

Living through hope and new projects

'My strength comes from hope. Before, I did not know what hope really was. When you progressively lose the way you see, you have to relearn how to use your eyes. It means directing my gaze downwards, then to the right and left. Sometimes people do not understand and think it looks strange, when in reality I am simply trying to see. After my diagnosis I became almost obsessively interested in fashion. At first I did it because I needed to feel attractive again, to look in the mirror and recognise myself. I wanted to prove first of all to myself that a hearing aid, glasses or an illness did not erase who I was. The need to retrace my whole life gave rise to my autobiographical book Le mie orecchie parlano. I started presenting the book in schools, and then the SuperAbile project was born. In just a few years I have met around forty thousand people: school pupils, university students, professionals, prisoners and recovery communities. They have been wonderful opportunities for dialogue and sharing. I invested my savings and part of my pension in the project. I never saw it as a cost, but as a human investment. At a certain point I understood that social media could be an important tool. Today my community numbers thousands of people, but above all it is made up of stories and relationships. From telling a story came the need to do something. That is how, in October 2025, I founded Vedo Oltre APS, a social promotion association whose aim is to shine a huge spotlight on rare diseases. On 22 April 2026, my birthday, I released my first single, AC22, which tells the story of my life, my difficulties, my fears and my hopes.'

Looking to the future

'When people ask how I imagine my future, I always say it is the question that frightens me most. I have so many dreams, so many goals and so many things still to do, and mine is a race against time. But it is not a race driven by fear. It is a race driven by hope. Today I live through hope, and my goal is to reach the day when I close my eyes knowing I have done everything within my power, for myself and to leave something to others by making visible what so often remains unseen.'