“My mother had a personality that could capture an entire room, and an infectious laugh and charm people were drawn to,” says Cecilia D., of her mother, Lynda (dx 1988). “She never let scleroderma define her. To be her daughter is a privilege I carry with pride.”
When Cecilia was around 9, her mother began developing alarming symptoms: “She was exhausted all the time. One day her facial skin got very tight, and that’s when the doctors knew,” she says. After several doctor’s visits, Lynda was finally diagnosed with with CREST syndrome—calcinosis, Raynaud’s, esophagitis, sclerodactyly, and telangiectasia.
“My mother’s life drastically changed after being diagnosed,” she describes. “With all the changes and setbacks to her health, my mother did not let scleroderma stop her from living her life.”
Cecilia remembers her mother wearing gloves and padding to ease the pain of calcinosis, and how self-conscious she became when visible symptoms spread to her face. “She was a beautiful woman, but she didn’t want her picture taken anymore.” Cecilia says. “That was hard for me. I loved photography and wanted to capture her beauty.”
Even as the disease progressed, Lynda remained determined to make lasting memories with her family. “Scleroderma did not make traveling easy, but my mother was determined it would not stop her,” she recalls. “She snorkeled with me in Hawaii and hiked to the top of a mountain with my dad.”
In 2012, Lynda was diagnosed with metastatic lung cancer and passed away the following year at 59. She had lived with scleroderma for 25 years. “For all the suffering this disease brings, it also gave us strength and humility,” Cecilia says. “It taught us to treasure life’s small moments—coffee on the porch, dancing in the kitchen to her favorite songs by Bonnie Raitt, watching the waves crash at the beach, and watching the Phillies.”
Today, Cecilia honors her mother by sharing her story. “Scleroderma is not for the weak. My mother’s courage lives on in all of us—and I hope her story brings someone strength on the hard days,” she says. “Don’t let this disease stop you from living. Be your own advocate. Your strength matters.”
We are grateful to Cecilia for sharing her mother’s story. To learn more about how the SRF is advancing research toward a cure for scleroderma, visit our website: srfcure.org
