“Hope isn’t just a feeling—it’s a choice I make every morning,” Kristina H. says (dx 2022). “Even when my body feels weak, my spirit is unbreakable.”
For years, she felt unexplained pain and stiffness in her joints, a consistent and deep fatigue, and skin that was continuously growing tighter. “My hands would turn white or blue in the cold, and I struggled with heartburn and swallowing,” Kristina says. “At first, I thought it was just stress or getting older. I didn’t realize my body was trying to tell me something more serious was happening.”
“It’s important to advocate for yourself and trust your instincts,” she advises. “If something doesn’t feel right, keep pushing for answers. Your health is worth it.” After visiting multiple doctors and taking countless tests, Kristina finally received an official diagnosis: diffuse systemic scleroderma.
“Hearing those words was both a relief and a shock. Finally, I had a name for what was happening, but I also knew my life was about to change forever,” Kristina says. “Since then, it’s been a journey of learning how to live with this disease, how to listen to my body, and how to keep fighting, even when the days are hard.”
Living with scleroderma has shaped Kristina’s perspective in powerful ways. “I’ve learned that I am stronger than I ever imagined,” she says. “And I’ve learned that every day, no matter how small the steps, is worth fighting for.”
One of the brightest moments of the past year came when a local nonprofit gifted Kristina and her husband their dream wedding. Her unforgettable day which was recently featured in People magazine, bringing widespread attention to scleroderma. “I was a bride with a dream, and my wedding day truly celebrated love, hope, and resilience,” she says.
Her goal now is to use her voice to help others in the scleroderma community. “I want to be there for others who are just starting their journey with scleroderma, and to remind them that they’re not alone and that there is hope,” she says. “I want to help build a community of support and compassion, where no one has to feel invisible.”
Kristina believes research is the key to that future. “Scleroderma research gives me, and so many others, hope. Hope for better treatments, better understanding, and one day, a cure,” she says. “I know firsthand how scleroderma can steal moments, dreams, and health. But I also know that knowledge is power. Every new discovery brings us closer to answers and to a future where no one has to face this disease alone.”
Thank you, Kristina for sharing your story and for your passion toward supporting scleroderma research.
