Giusiana Prosser

Living with a rare disease has reshaped every part of my life. Daily routines that should be filled with other things are filled with appointments, symptom management, and constant rest just to maintain stability. I’ve faced hospitalizations, mobility challenges, and the emotional toll of navigating a condition that most providers don’t understand. It’s incredibly isolating to live in a world not built for people like me, where even getting a diagnosis can take years. My independence has been limited at times, but my strength, resilience, and adaptability have grown in ways I never imagined. This journey has sparked a determination to advocate for myself as well others. It has driven my passion to create change, support the rare disease community, and raise awareness about the realities we face. While my disease has taken so much of what I hoped for my future, it has also given me purpose, perspective, and a powerful voice I never expected to use this way.

I advocate because I know what it feels like to be invisible in the healthcare system; to be dismissed, misdiagnosed, and left without answers for years. It's easy to assume when you're sick, you just go to the doctor and get an answer and adequate treatment. However living with rare and chronic conditions has shown me just how broken and inaccessible our system can be, especially for those of us with complex or misunderstood conditions. I’ve spent countless hours educating doctors, chasing referrals, and fighting just to be heard. Through this, I realized I wasn’t alone, there are millions of others going through the same thing, feeling just as overwhelmed, exhausted, and forgotten.

Advocacy gives that pain a purpose. I speak out to raise awareness, not just for myself, but for the entire rare disease and disability community. I want to create the resources, support, and visibility that I wish had existed when I first began seeking care. Whether it’s helping someone find the right doctor, sharing tips for navigating medical neglect, or pushing for policy changes, my goal is to make the path less isolating for others.

I believe that every story matters. By amplifying these stories, the stories and voices of patients who have been dismissed, ignored, and neglected by the medical system as a whole, we not only build community, we build power and create change. Advocacy is how we move from surviving to making real change. As long as I have a voice, I’ll continue using it to fight for a world where rare patients like me aren't ignored, but are listened to, understood and valued.