Antonio Santilli
I know dystonia well. Not from hearsay, nor from medical readings: I know it on my skin, in my muscles, in my nerves, in my voice, in my daily thoughts. Oromandibular dystonia is my traveling companion—often uncomfortable, always present. But it has never managed, and never will manage, to define who I am.
My name is Antonio, and I live with oromandibular dystonia. I am a manager in one of the world’s largest companies in the naval sector. My work is largely based on communication: speaking, motivating, solving problems, facing challenges with clarity and dialogue. Out of all possibilities, dystonia chose my mouth. My voice. My tool for both work and life.
Life, I often say, has a strange sense of humor.
But it has not taken away anything I wasn’t able to transform. I am also a semi-professional diver, a climber, I have practiced jujitsu for years, and I am a DJ with a deep passion for music. And just when the illness tried to push me into a corner, I realized something: every fall, every obstacle, every struggle can become an opportunity. Every pain can teach us something—if we choose to listen.
Dystonia has brought me to my knees, yes. Like every chronic illness, it has carried frustration, pain, and fatigue. But then it taught me to rise again. It forced me to look within, to reassess my priorities, to learn patience, humility, and above all resilience.
Today I am no longer the same man I was before. Today I am stronger. I am also the father of two young children. And in this role, perhaps more than in any other, I have found the most powerful drive not to give up. My resilience, my tenacity, every battle I fight each day is not just for me. It is for them. So they can grow up knowing that strength is not only physical, but also the kind that keeps us standing when everything seems to push us down. This is the greatest opportunity I have as a father: to show by example that here, we never give up, that difficulties are never an excuse to quit, but a chance to grow and become better people.
I discovered that my passion for music could also become a tool to do good, to connect, to heal in a different way. I created a YouTube channel, HerMutoDJ, where I share my original productions as a DJ. Music has become my alternative voice, my way of speaking even when my mouth struggles. It is a channel dedicated to those, like me, who face the challenge of dystonia every day, but also to those who have found their balance and want to celebrate each day as a small victory. HerMuto was born as a project full of words and lyrics, which deserve to be heard and understood. A counterpoint to oromandibular dystonia.
I want to bring this positive energy to others. That is why I dream of offering a free DJ set during one of the events dedicated to dystonia. Not to put myself in the spotlight, but to send a clear message to those who feel defeated: you are not alone. There is always a way, a path, a corner of beauty we can still explore. Even in pain, joy can be found. Even in illness, we can dance.
I want my story to be a strong signal for those who are fighting in silence: don’t give up. Use every obstacle as a lever to grow. Dystonia can change us, yes. But we are the ones who decide how. I chose to make it an opportunity for rebirth—to become more aware, more present, more human.
I know it is not easy. I know there are dark days. But I assure you, the light always returns if we learn to seek it even in the cracks. Dystonia has not taken my life: it has taught me to live it with new eyes. And if today I can make even just one person smile with a little music, then yes—every step, every pain, every note has been worth it.
Antonio Santilli, Italy
