Huntington, the Power of Storytelling: "Speaking Makes Us Feel Like a Community and Less Alone"
– Written by Simone Caisraghi on 28th October 2025
A moment of listening, dialogue, sharing — and, in many ways, also a moment of liberation. The webinar organized by Huntington Onlus last Wednesday, September 17, titled “One Disease, Many Faces: Stories and Experiences of People Impacted by Huntington’s Disease”, held as part of the European project Moving Forward, turned into a gathering of rare emotional and collective intensity. It was a highly successful event, with 77 people registered and up to 45 active participants. For some, it was their very first time attending an event dedicated to Huntington’s disease, which made the session even more meaningful.
The webinar featured the testimonies of three individuals. Two shared their personal experiences with genetic testing — one tested positive, the other negative. The third, a wife and caregiver, shared her perspective as a partner living alongside the disease.
This was not just an informative event, but a space where the voices of patients, siblings, children, and caregivers became instruments of mutual recognition — the heart of the entire narrative.
“It was a moment to ‘bring fragments of history together,’” explained Elisabetta Caletti, President of Huntington Onlus, at the closing of the event. “We realized that sharing means lightening the silence and isolation that often accompany the arrival of the disease in a family. It’s difficult, but together we can try to reconstruct, at least in part, the complexity of Huntington’s.”
Building a Sense of Community
From the very beginning, Claudia Villa, Italy’s coordinator for the European project Moving Forward, emphasized the need to create a safe and protected space: “If you don’t want to appear on camera, that’s no problem — someone will read your questions anonymously.” Her words immediately highlighted the goal of building a community and a safe environment, where people could speak without fear, protected by mutual respect.
Then the spotlight shifted to the true protagonists of the evening — people with different experiences. A son who tested negative shared: “I consider myself very lucky, but it’s harder to keep these emotions inside than to share them. I think a webinar like this helps us coexist with the burden we all share. In the end, we’re all a bit like relatives, connected by this gene.”
Another participant, who tested positive, said: “I was five when my mother got sick — I remember how destabilizing that time was. But now I know we’re not alone: my family, the associations, even a congress in Warsaw helped me understand that a network exists. I’ve always been someone who tells their story — I believe that sharing helps, while hiding doesn’t.”
The Emotional Struggles of Caregivers
A psychologist, who is also the wife of a patient, spoke about the transformation that followed her husband’s diagnosis: “At first, I was angry, because I no longer recognized my husband. But once the disease had a name, the anger faded, replaced by love and deep tenderness. For a caregiver, every day feels like Monday — each one begins with effort, but there are also nourishing moments, like Sunday lunch together.”
She went on to describe the experience as “rich in emotions”: “I was struck by the positivity of a young man who faced the present without being crushed by the uncertainty of the future. This ability to live in the here and now is an antidote to stigma and fear. We can’t know how the disease will manifest, but we can’t lose the beauty of today either.”
In the second part of the webinar, participants moved into protected virtual rooms, where each witness, guided by psychologists, could express themselves in a more intimate space. During those 30 minutes, each story reached its most personal, emotional, and profound dimensions — of relationships, of the impact of the disease, and of connection with others. The illness was seen as a collective experience that finds meaning through sharing. Those who spoke found relief in being listened to without judgment, while those who listened recognized parts of their own lives in others’ words. The time available felt too short — the engagement and depth of connection were both intimate and powerful. Many wished the session could have lasted longer.
Living the Present Without Being Crushed by the Future
Many common themes emerged across the different stories, highlighted at the end by both the psychologist moderators and the speakers themselves. One key theme was the importance of building networks of care and support: “Sharing not only difficulties but also positive aspects with family, friends, colleagues, or even shopkeepers helps us feel acknowledged and validated in our struggles. It’s essential.”
Another recurring idea was that of a life lesson: “A young man who tested positive showed that it’s possible to live in the present without being crushed by the future. That positivity is an antidote to stigma and fear.”
A particularly meaningful word that emerged was transformation: “The caregiver changes alongside the patient. The challenge is to remain lucid and balanced, but transformation can also hold moments of beauty — ‘nourishing spaces,’ moments that feed both the caregiver and the cared-for.”
The most touching moment came at the end, when the speakers shared how they felt after speaking publicly: “It was an enriching experience. It’s always wonderful to connect with people who truly understand what you’re going through. Speaking always teaches you something new.”
Others described a sense of liberation: “I was anxious at first, but as soon as I started talking, I felt at home. It was wonderful to receive messages from people who know and understand my situation. It felt like being embraced.”
Sharing to Rehear One’s Own Story
Some participants reflected on the deeper meaning of sharing: “Life is a narrative — sharing means revisiting and re-hearing your own story. It’s a positive way to reclaim the words we use. Every time you share, you receive much more than you give.” These words helped everyone understand what had truly happened: telling their stories had not just been a release, but a generative act — a form of liberation that made everyone lighter and more self-aware.
The evening ended with a heartfelt expression of gratitude. “We are already a community,” said Claudia in her closing remarks. “This is our first step. I hope today you’ve felt a little less alone.” She concluded with a wish: “Let’s rediscover the values of solidarity and unity. They must come first if we are to build strong bonds between families, associations, and society.”
Looking ahead, the association is preparing for the upcoming European Huntington Congress in Bucharest, where Huntington Onlus will be represented by a delegation. “It’s an opportunity to connect and bring home new insights and energy,” Claudia explained.
The positive feedback reinforced the importance of such moments — for building community, creating connections, and offering support. The webinar left behind a precious legacy: proof that even in its harshness, the disease can become a space for community, shared storytelling, and even renewal.
Among participants, a shared realization emerged: speaking helps, storytelling heals and frees. In those exchanged words and emotions, pain turned into connection, loneliness into community, resignation into hope. The collective awareness was clear: opening up to others doesn’t mean exposing yourself — it means gaining strength.