I’ve been living with scleroderma for 24 years. In that time, I’ve learned that one of the hardest parts of this disease isn’t just the symptoms—it’s the unpredictability. Scleroderma can touch nearly every part of daily life, changing what tomorrow might ask of me.

I live with chronic pain, fatigue, joint stiffness, and skin tightening, and those challenges can make simple activities feel anything but simple. Over the years, I’ve also had many fingers amputated, which means I’ve had to adapt—not just to a new way of doing things, but to a new way of moving through my day with patience and creativity.

And then there’s the emotional side—often overlooked. Living with scleroderma can bring a heavy burden of feeling misunderstood, isolated, or frustrated by limitations that others may not see. On top of that, there are the constant appointments, treatments, and lifestyle adjustments. It requires resilience every day, and it can be emotionally exhausting to balance hope with the reality of living with a chronic illness.

If I’ve learned anything from this journey, it’s that strength can be found in the moments when you choose to keep going—especially when you don’t know what’s coming next.

What I want people to know is this: living with scleroderma can feel like climbing a mountain that changes shape every day. Yet even in uncertainty, strength is built. I’ve found that meeting each new challenge with patience, self-compassion, and resilience matters. Small victories count. Leaning on loved ones helps. And difficult days do not have to define the future.

Scleroderma may affect my body, but it does not diminish my spirit. It hasn’t taken my dreams or my ability to live a meaningful, inspiring life. Every step I take—with courage, hope, and determination—becomes proof that even in hardship, my spirit remains remarkably powerful.”