Amber was just nine years old when she was diagnosed with scleroderma in 1997. More than 20 years later, she looks back at her journey and how far she has come.
Like many with this disease, she encountered both physical and mental challenges. “I began experiencing excruciating pain with cold exposure, had undiagnosed GI problems, and had breathing difficulties,” Amber says. “But the psychological impact hit harder.”
“When I was younger, I felt so alone and scared,” she continues. “It was frustrating to not have answers or more people to talk to about my symptoms.”
This is why Amber values scleroderma research. “Research means a growing community where patients can unite with a common goal,” she says. “It means that when children are diagnosed, there are more answers than there are questions, so that hopefully they don’t struggle as much as I did.”
Ultimately, Amber looks to research as the best hope for a better life. “The more we understand, the brighter the future becomes.”
