“My mom’s journey was difficult to wrap my head around,” Katie L. shares of her mother’s experiences with scleroderma. “I learned over time that there would be no quick fix or just one right answer. It became about acknowledging what her life and ailments consisted of at that time and figuring out how I could help.”
For nearly a decade, her mother, Nancy, battled scleroderma—a journey that was as emotionally taxing as it was physically challenging. Affectionately called YaYa by her grandchildren, she was fiercely independent, and as one of the few women in the construction industry for over 25 years, she consistently embodied strength and resilience to her family.
“She was a go-getter and a do-it-yourselfer. She wasn’t going to ‘need’ anyone,” Katie recalls. “But as her disease progressed, I realized how important it was to be there for her emotionally and physically. Most importantly, I wanted her to know that it was okay—that no matter what she was experiencing, we were going to be okay.”
Through her mother’s battle with scleroderma, Katie developed a deep appreciation for the importance of research. “Scleroderma research doesn’t just look at the disease from one aspect of science. They are trying to understand all the complexities of this disease, and are truly interested in their patients and what they are going through,” she says. “Creating an open environment for both doctors and patients opens the floor for undiscovered ground to progress research and one day find a cure.”
We are deeply grateful to Katie for sharing her mother’s story with us. Here at the Scleroderma Research Foundation, we are dedicated to advancing research for a cure. The advocacy efforts of Katie, her family, and members of the scleroderma community are critical to making progress in understanding this challenging disease.
