“I’ve learned that I’m absolutely a fighter,” says Tiffany S. (dx 1989). “Scleroderma has shown me how resilient I am.”
“I’ve never known a life other than fighting and living with scleroderma,” she explains. Tiffany’s journey with scleroderma began when she was just a toddler after she started experiencing extreme lethargy and bruise-like patches all over the left side of her body. After multiple misdiagnoses, a doctor suggested a diagnosis that seemed improbable: scleroderma. Tiffany’s parents had her take a series of medical tests, which confirmed she had scleroderma, along with lupus, mixed connective tissue disease, and juvenile rheumatoid arthritis.
The diagnosis was overwhelming. Doctors predicted that Tiffany would be in a wheelchair by age ten and might not live past fifteen. In the years since, she has defied these expectations. “Scleroderma has affected my quality of life, my social skills, my everything. But my focus is on the positive, not the negative,” she says. “I’m just grateful to still be alive after fighting for over 35 years.”
These experiences have shaped her passion for advocacy and support within the scleroderma community. “I want to continue speaking to the newly diagnosed warriors about living with this disease,” she says. “I want to continue making a difference in this small community.”
In addition to facilitating her local support group, Tiffany acts as a staunch advocate for advancing research. “Scleroderma research is so important to me because it affects how I could live my life. It affects whether or not I’ll be able to see my son live a long life,” she says. “If there’s a cure or a new medicine that slows down the progression, then that’s a huge win!”
We are deeply grateful to Tiffany for sharing her story with us. Here at the Scleroderma Research Foundation, we are dedicated to advancing research for a cure. The advocacy efforts of Tiffany and people like her are critical to making progress in understanding scleroderma.
