"Usher syndrome is part of my story. I am also ____."

For many years, hearing loss was simply one part of my life. Then, in my early twenties, I began experiencing changes in my vision and learned that I had Usher syndrome. The diagnosis was difficult, and at times frightening. Yet reclaiming my narrative means recognizing that my life is not a story of loss. It is a story of adaptation, creativity, love, and purpose. I am proud of the work I do as an architect, proud of the stories I write as a novelist, and grateful for the people who have stood by me along the way. Usher syndrome is one thread in the fabric of my life, but the fabric is much broader and far more colorful.

For me, reclaiming my narrative means refusing to let Usher syndrome, blindness, or other people’s assumptions about disability decide what my life will look like. It means acknowledging the things I may lose without allowing them to overshadow everything I still have to experience. I am not defined by what I am losing, but by everything I still have to experience, the people I love, and the life I am determined to live. Reclaiming my narrative means choosing to tell my own story—not as one of tragedy or something that needs to be fixed, but as a story of adaptation, resilience, adventure, love, and joy. To understand that my purpose is to share my perspective and experience with others, and do everything in my power to help others in the community. Usher syndrome is something to understand, not something to fix—though a cure would be great! I hope my story can help people see blindness not as the end of a life, but as the beginning of a different way of experiencing the world.

In my 20s, when I found out from my Eye doctor and it is impacted me so hard when I found out that I have Usher Syndrome, I was lost in the ways because I thought I am seeing anywhere but no I am so grateful to know this better in my future and same time, It is a lot of challenges in my 20s to now, it is not easy to be accept but I accept that who I am and be proud of myself as I am Deafblind. I know it is so hard but that's ok I do have people who cares about me so far. Very support that's where I need it for this happening in my life.

Being diagnosed with Usher syndrome changed the way I see my future—quite literally—but it did not change who I am. I still run my business, play tennis, travel, spend time with the people I love, and say yes to new experiences. I have also found a new purpose in sharing my journey and raising awareness about a condition most people have never heard of. There are certainly things I have to navigate differently now, and there are fears and frustrations that come with that. But I don't want Usher syndrome to become the most interesting thing about me. It is one part of a life that was already very full before my diagnosis and that I intend to keep living fully. Reclaiming my narrative means being honest about the hard parts while making sure they don't overshadow everything else that makes me who I am.

In the fall of 2014, at the age of 43, I found out that I had RP. Up until then, I had driven an average of 4,000-6,000 km per month for my job. Up until then, I had experienced the symptoms of RP, but it never occurred to me that there might be something wrong with my eyes, because I could see what I saw clearly. I had only had one or two minor accidents in my 20 years of driving. But when I was confronted with RP, I immediately decided to stop driving. Knowing how little I actually saw, I couldn't give others a chance to do what I wanted. I was already an extra danger, but I didn't know it until then. My hearing had also been a problem since childhood, but it was easy to live with the fact that I could hear very little in one ear. I only found out that the two are connected and that Usher syndrome exists this year, 2026, at the Usher conference organized by the Hungarian Deaf-Blind Association, to which I received an invitation from one of my doctors. I am constantly working on adapting my life rhythm to my reduced abilities, but it is not working out. Today, I am a "danger" to others even on foot. I walk briskly on my already familiar routes and unfortunately, if someone unexpectedly crosses my path, it usually results in a collision. Fortunately, I can still do my work in front of the monitor well. My eyes and brain get very tired in the evening, but this is bearable.

Reclaiming my narrative means not letting Usher syndrome be the first or only thing people see about me. I’m the Senior Patrol Leader of my Boy Scout troop, I backpacked Philmont, I play trombone in the marching band, I’m on the golf team, and I play piano. I like challenging myself and proving I can do hard things. I’m also probably the smartest person in my family, and I have the IQ score to back me up. Usher syndrome is part of my story, but there’s a lot more to me than that.

Hi, I’m just an ordinary person; I’m married with three beautiful children—nothing out of the ordinary. I feel happy through empathy when the people around me are happy. I am a physiotherapist and osteopath with a master’s degree and run my own private practice; I really enjoy it because I’m able to make others happy, too. I play a lot of sports because I enjoy it,I have a nice, fully equipped home gym.; it complements the way I care for myself and rounds out my healthy lifestyle. I still have many dreams to fulfill: I want to buy a beautiful Ferrari because powerful cars really thrill me, I want to travel the world, and—above all—I want lots of grandchildren. So, I’d better keep striving every day to make my dreams come true.

Soy madre de un niño valiente, de un pequeño luchador y de un explorador incansable. Un niño que descubre el mundo a su manera, que avanza a su propio ritmo y que, con cada pequeño paso, nos enseña el verdadero significado de la valentía.

Para mí, recuperar nuestra historia significa mirar más allá del diagnóstico y recordar que el síndrome de Usher es solo una parte de la vida de Alessandro, no lo que define quién es. Desde que llegó su diagnóstico, muchas veces las palabras “sordera”, “síndrome de Usher”, “discapacidad” o “retinitis pigmentosa” parecen ocupar todo el espacio y hacer que los demás vean primero sus dificultades y después al niño que realmente es. Para mí, recuperar nuestra narrativa significa cambiar esa mirada. Significa hablar de Alessandro como lo que es: un niño curioso, valiente, luchador, lleno de vida y con un mundo entero por descubrir. Significa celebrar sus pequeños grandes logros, respetar su propio ritmo y no permitir que un diagnóstico escriba por adelantado todo lo que podrá o no podrá hacer. Su historia no termina en un diagnóstico. Su historia apenas está comenzando. Y como madre, Quiero que Alessandro crezca sabiendo que su historia le pertenece a él, que puede lograr y hacer todo aquello que se proponga y que sus sueños no tienen por qué estar definidos por un diagnóstico. El síndrome de Usher forma parte de su camino, pero nunca será quien decida hasta dónde puede llegar.

I am the mother of a brave boy, a little fighter, and a tireless explorer. A boy who discovers the world in his own way, moves at his own pace, and—with every small step—teaches us the true meaning of courage.

For me, reclaiming our story means looking beyond the diagnosis and remembering that Usher syndrome is just one part of Alessandro’s life—it does not define who he is. Since his diagnosis, the words "deafness," "Usher syndrome," "disability," and "retinitis pigmentosa" often seem to take up all the space, causing others to see his challenges first rather than the boy he truly is.
For me, reclaiming our narrative means shifting that perspective. It means speaking of Alessandro as who he is: a curious, brave, and spirited boy—a fighter—with a whole world waiting to be discovered. It means celebrating his small yet significant achievements, respecting his own pace, and refusing to let a diagnosis predetermine what he can or cannot do. His story doesn’t end with a diagnosis; it is just beginning. And as a mother, I want Alessandro to grow up knowing that his story belongs to him, that he can achieve whatever he sets his mind to, and that his dreams need not be defined by a diagnosis. Usher syndrome is part of his journey, but it will never be what decides how far he can go.

I don't let my disability define me, but I do own it. Connecting with others who share a similar condition, and using the resources available to us, leaves me feeling empowered. Reclaiming my narrative means not being held back. It means pushing myself out of my comfort zone and encouraging others to take risks too, since life is short. Who would've thought a legally blind person like me would become a wood burning artist, creating art with a fiery pen?!

I want to grow up to become a doctor. Someone who makes sure people with disabilities are included and live their best lives.

Reclaiming means so much to me! because I worked so hard on building everything from the ground up as a disabled person with many challenges personally and on the way. Now I am giving back in so many ways. I volunteered with DeafBlind, people with cerebral palsy, children for many years and I put all of the blood and sweat in developing BJB Enterprises my company today.

Thinking about the past, some moments make sense when you know your Usher Syndrome diagnosis, like the fact that I never felt completely comfortable in dark environments or the couple of times I kicked a step or a rock in the street and ended up hurting my toes. My diagnosis is from 2016 and I'll be 40 next year, but even since then, it has never defined me. I still play volleyball, because it is the sport I love and because I have so much to give to the Brazilian national deaf team. It's where I mostly realize how much of my sight I’ve already lost, but my friends are always cheering me on, and that keeps me going. Somehow, it's a challenge I put myself through as a way not to let Usher Syndrome define me, especially retinitis pigmentosa. I have a beautiful family with my loving and supportive wife. I have to be strong and take on all the roles I have (son, husband, father) as best as I can, not letting Usher Syndrome define me at all. And lately, as a gift from my wife, I'm taking guitar lessons and finally learning to play a musical instrument. I'm deaf, but I've always loved music and I'm loving the experience I'm having right now.

For a long time, it was easy to look at my life through the lens of what Usher syndrome has taken away. But I am learning that my story is much bigger than what I have lost. I am a husband, a father, a runner, a professional, and a person who still has goals, questions, dreams, frustrations, and hopes for the future. Usher syndrome has changed the way I experience the world, but it hasn’t taken away my desire to experience it. I still want to challenge myself, learn, accomplish things, be there for my family, and keep moving forward. Some days that looks different than it did when I was younger. That’s okay. Adaptation isn’t giving up—it’s finding another way forward. Reclaiming my story means allowing myself to acknowledge the difficult parts without allowing them to become the entire story. I don’t want people to see only a diagnosis when they see me. I want them to see Victor. A husband. A father. A runner. A professional. A person who is still growing, still learning, and still becoming. Usher syndrome is part of my story. It is not the whole story.