Living rare: finding my voice with diffuse systemic scleroderma
By Kristina Hamilton
Kristina Hamilton is a patient advocate living with diffuse systemic scleroderma. Diagnosed in 2022, she shares her lived experience to raise awareness of rare and often misunderstood autoimmune diseases. Through storytelling and advocacy, Kristina is committed to helping others feel seen, less alone and empowered to use their voices within the rare disease community
Living with diffuse systemic scleroderma means waking up each day in a body that no longer behaves the way it once did. Some mornings, it feels unfamiliar. Other days, it feels like a constant negotiation between what my mind wants and what my body will allow. This is the reality of living with a rare autoimmune disease—one that reshapes not just your body, but your sense of self.
I was diagnosed in 2022 after months of unexplained symptoms that slowly began to change my appearance, my mobility and my daily life. Diffuse systemic scleroderma is rare, complex and often misunderstood. It affects the skin and internal organs, but what people don’t always see is the emotional weight that comes with it—the grief of losing the person you once were, the fear of what comes next and the exhaustion of having to explain an illness most people have never heard of.
Scleroderma has changed the way I move and the way I look. It has impacted my strength, my energy and my independence. Simple tasks can feel monumental. There are days when pain and fatigue win, and days when I push forward anyway. What people often don’t see is the resilience it takes to keep showing up—to work, to love, to live—when your body feels like it’s working against you.
Living with a rare disease can be isolating. There is comfort in community, but finding people who truly understand is not always easy. Too often, rare disease patients are overlooked, dismissed or misunderstood. Our stories don’t always fit neatly into boxes and our experiences are not one-size-fits-all. Yet every story matters.
In April 2025, my husband and I were gifted a dream wedding through the nonprofit Wish Upon a Wedding. Our story was later shared in People Magazine. While this moment brought joy and visibility, it also reminded me of something deeper—that even in illness, life can still hold beauty, love and celebration. Scleroderma may be part of my story but it does not define my worth or limit my capacity for happiness.
Being loved and seen while living with chronic illness is powerful. It reinforces that we are more than our diagnoses. For me, that moment was not just about a wedding—it was about hope. It was a reminder that joy and chronic illness can coexist and that rare disease patients deserve to be celebrated, supported and heard.
Today, I choose to use my voice. I speak up not only for myself, but for others living with Scleroderma and rare diseases who may feel invisible or unheard. Awareness leads to understanding and understanding leads to compassion. By sharing my journey, I hope to help others feel less alone and to shine a light on a disease that deserves more attention, research and empathy.
Living rare is not easy, but it is powerful. Our stories matter. Our voices matter. And together, by sharing them, we can change the narrative—one story at a time.
Rare Patient Voice are the proud sponsors of the Patient Voice section of RARE Revolution for February, March and April 2026. They provide patients and family caregivers an opportunity to participate in all types of research including market research, health economics outcomes and real-world evidence, user experience/human factors studies and clinical trials. The RPV community includes over 185,000 patients and family caregivers across more than 1,500 diseases, both rare and non-rare, in nine countries. Learn more here.
