HDYou: Community Stories

HDYou Community Stories is a series dedicated to sharing stories from the HD community for the HD community. We are excited to include blogs to that program which will allow young people to tell their story through writing rather than through videos. Explore more HDYou Community Stories here.

The HDYou Community Stories is sponsored by Neurocrine Biosciences, Teva Pharmaceuticals, uniQure, Wave Life Sciences, Roche and the Griffin Foundation.

Claudia's Journey with HDYou

My name is Claudia, I’m 27 years old, and I come from a small town in Northern Italy, about 40 minutes from Milan. HD has been part of my life for as long as I can remember. My mom lives with HD, and before her, my grandmother did as well. I became aware of the disease when I was 18 years old, and at that moment my life changed forever. For now, I have chosen not to take the genetic test—a decision that is deeply personal and part of my own way of navigating this journey.

When I was asked to write this blog as a year wrap-up, I immediately felt excited and honored. I loved recording the HDYou videos, and writing felt like a natural extension of that experience. It gave me the opportunity to slow down, reflect, and share a piece of myself with the community.

How did you get connected with HDYO?

I first encountered HDYO in 2017, during the visit to the Vatican with Pope Francis for the “Hidden No More” event. That moment was incredibly powerful and eye-opening for me. Afterward, I attended the virtual congress and stayed connected with HDYO, eventually becoming an ambassador.

In 2022, at the EHDN Congress in Bologna, I shared my story publicly for the first time during an HDYO panel. Then came the Glasgow congress—and from that point on, I never stopped. HDYO became not just an organization, but a home.

What made you interested in participating and leading the HDYou Community Stories?

When we were invited to apply for the Executive Committee, I decided to challenge myself and step outside my comfort zone. Leading the HDYou Community Stories has been one of the most meaningful experiences of my journey.

It is deeply inspiring—it allows me to listen, to learn, and to grow. Through these stories, I meet incredible people, expand my perspective, and help others feel seen, heard, and less alone in their experiences.

What was it like the first time you openly shared about HD impacting your life?

The first time I shared my story, I was overwhelmed with fear. I was speaking about my life in front of strangers for the first time, and my anxiety was intense.

Ashley, who was sharing the stage with me, gave me immense strength. She reminded me that no one knows my story better than I do, and that I had the right to tell it in my own way. From that moment, something shifted. I felt safer, calmer, and we were able to speak openly and honestly about our lives.

What is the hardest part about sharing your own story and working with others to share theirs?

The most important thing is being mindful and respectful of each person’s boundaries. Everyone has the right to share only what feels safe and comfortable for them.

I always ask participants if there are topics they would prefer to avoid, and I share the questions in advance so they have time to reflect and decide what they feel ready to talk about. During the recordings, we create a true safe space—everything can be edited, and nothing is ever forced.

Sharing your story can be terrifying. Fear of judgment, misunderstanding, or vulnerability is very real. But HDYou Community Stories exist precisely to counter that fear—with empathy, listening, and unconditional acceptance.

What is your favorite story or experience to share?

Without a doubt, the connections and friendships that have grown within the community.

A few years ago, during a conference in Strasbourg, I met Nikola. In just a few days, our bond became incredibly strong. She became much more than a community member—she became a sister from another mister. Since Strasbourg, our lives have stayed intertwined. She came to Italy, and in 2026 I will go to the Czech Republic. In between, we count down the days to conferences and congresses, just to hug each other again.

Nikola represents everything this community stands for. She has been a lifeline, a source of strength, and a sudden light during dark moments. I will always be grateful to HDYO for bringing us together—this is a friendship that will last a lifetime.

Why do you think sharing your story is important? And why are the HDYou Community Stories important for the community?

Sharing your story is powerful. It helps us recognize ourselves in others and reminds us that we are not alone in facing this disease. Hearing someone speak your same fears or emotions can be life-changing—it’s the first step toward belonging.

HDYou Community Stories create that sense of belonging. They connect people across countries, cultures, and experiences. Even within a single interview, you can discover different perspectives, coping strategies, and ways of living with HD. That diversity is what makes these stories so meaningful and inspiring.

What advice would you share with people impacted by HD that might be scared or nervous to share their experiences?

Opening up about your life—the beautiful parts and the painful ones—can be incredibly scary. And it’s important to say this clearly: no one is ever obligated to share. Storytelling should always be an option, never a pressure. The HD family welcomes everyone—the loud voices and the quiet ones, the confident and the hesitant.

If you feel the desire to share but are afraid, remember this: it’s your story, your life, and no one can tell it better than you. You don’t have to share everything—only what feels right for you. And when you do, you may find understanding, connection, and a new strength that gently leads you toward a community, a family.

Any last thoughts?

I want to sincerely thank Jenna for trusting me and giving me the opportunity to lead the HDYou Community Stories. Thank you for believing in me and for allowing me to connect with and learn from so many ambassadors from around the world. It is an immense honor and a true joy to be part of this program.

I also want to thank Marisa, my organizational guru. Without her dedication, care, and behind-the-scenes work, none of this would be possible. Thank you for everything you do for this community—you are truly special.

Thank you from the bottom of my heart. I’ll see you at the next HDYou Community Stories video <3

HDYou Community Stories Playlist

The HDYou Community Stories is sponsored by Neurocrine Biosciences, Teva Pharmaceuticals, uniQure, Wave Life Sciences, Roche and the Griffin Foundation.