Anna G. (dx 2019) was just seven years old when she began displaying subtle but concerning symptoms. “The earliest signs that something wrong was when we noticed that her left leg was smaller than her right leg,” her mother, Heather, explains. “We also noticed an indentation from her scalp to her brow line.”
Their journey to a diagnosis wasn’t immediate, as Anna was initially diagnosed with a congenital condition. “We knew that these symptoms had not been present since birth and continued to dig for more information,” Heather explains.
“I connected with another mom on a scleroderma forum who was describing her child having similar symptoms,” she recalls. In September 2019, they traveled from their home in California to Pittsburgh, where Anna was diagnosed with linear scleroderma en coup de sabre (ECDS)—a rare form of localized scleroderma that affects the skin and underlying tissues of the face and scalp.
The uncertainty of the disease has been difficult for the Green family. “The most challenging part of navigating Anna’s diagnosis is not really knowing how the disease will manifest or if it will progress,” she says.
Still, she is quick to find gratitude. “We’ve met some of the most compassionate, inspiring people through this journey,” she says. “The scleroderma community, especially the moms I’ve connected with, have been a lifeline.”
Together, Heather and four other moms began planning what would become the first-ever Scleroderma Family Weekend, launching Memorial Day weekend in partnership with The Painted Turtle camp in Lake Hughes, California. While the camp is a new and exciting project, for Heather, it’s always been about something deeper: fostering a sense of belonging.
“We want to build community and connect these kids so they do not have to face this journey alone,” Heather explains. “So many of these kids have never met anyone in person with the same disease.”
Beyond building community, Heather is passionate about the future of scleroderma research. “On the path to a cure, research can uncover new treatments, evaluate effectiveness of medications and reveal the cause of the disease,” she says. “Ultimately, we want a cure to be found so that no one else has to live with this challenging and debilitating disease.”
We are grateful to Heather, Anna, and their family for sharing their story—and for their dedication to building community for others facing this disease.
To learn more about the upcoming Scleroderma Family Camp, please visit The Painted Turtle website below.
Pictured: The Green Family (Heather, second from left, and Anna, fourth from left)
