“She really did suffer from scleroderma in silence, and never once did she complain,” says Peg M. of her late daughter Carolanne (diagnosed in 1987). “She was compassionate to those who suffered and always extended her hand to help.”
Carolanne’s first symptoms appeared gradually. “After having her second child in 1985, the skin on her face started to show signs of scleroderma,” Peg recalls. “The year before she suffered from Raynaud’s in her hands.” Painful ulcers developed on her finger joints, and swallowing became increasingly difficult. Over two years later, they were able to visit a rheumatologist, and she came home from that appointment with a single word written on a slip of paper: scleroderma.
Getting a diagnosis was only the first hurdle. “She often would look me straight in the eyes and say, ‘Mom, we know more about this condition than the doctors do,'” Peg says. “There was a medication available that helped soften her facial skin but my daughter could not swallow pills. She tried everything but nothing worked,” she explains. “Doctors told her there was no cure and treatment was minimal so she decided to deal with this news and concentrate on raising her children.”
Carolanne kept moving forward anyway. “She was a great cook and never gave that up, even with her twisted fingers,” Peg says. “She was a trooper.” Carolanne worked as a teacher’s aide, wore gloves every day to protect her hands, and had surgery on her fingers so she could keep doing her job. “She told me, ‘I will not be held back. I have a long life to live,'” Peggy remembers.
In her last months, Carolanne was well cared for at home. “Her son came home from school each day and laid in bed with her to watch old black-and-white movies,” Peg says. “She was easy to please and always had a smile for us.” That last winter, Peg took her to Jupiter, Florida, where Carolanne enjoyed sitting outside in the sun. The following year, she passed away in the hospital at age 51.
“I pray that someday no one will ever suffer from this dreadful disease,” Peg says. Since Carolanne’s passing, she has organized awareness campaigns, participated in fundraising walks, and has become dedicated to sharing her daughter’s story. “She is missed more and more as I get older,” she says.
We are deeply grateful to Peg for sharing Carolanne’s story and for her continued support of scleroderma research.
