Living with Scleroderma

#SayScleroderma: Kate’s Story

By June 17, 2022No Comments
Kate and Parents

“While eating supper one night, five-year-old Kate showed her purple hands to my wife, Becky,” says Kate’s father, Matt. “She did so in amazement, but we were quite concerned.” Four years later, in 2016, Kate was finally diagnosed with scleroderma. “I was too young when diagnosed to know a life without it,” she says.

These days, her main symptoms of scleroderma are “tightening of skin around finger joints, Raynaud’s, and a rash on my face.” Kate also manages how her life isn’t like her peers. “I realized I can’t always do what everyone else can,” she says. Matt gives an example: “When friends swim at summer camp, she weighs the pain of ulcers from the ice-cold lake against the hot summer days.”

Even more challenging than these day-to-day difficulties is the uncertainty of the future. “A couple of years ago, she started to piece together the potential prognosis of limited systemic scleroderma and what that means for her,” Matt says. “We sat on her bed and all wept as we acknowledged the potential prognosis and prayed for a future for her.”

These anxieties are a large part of what has prompted their desire to help raise awareness. “As her parents, we have felt so alone and scared as we wrestle with her disease,” Matt says. “We do not want any parents to feel alone, and we want the scleroderma world to know it is okay to grieve.”

They all look to research as a source of hope. Matt says, “A cure is the key for any answers in her life.” Kate also wants to understand more about this disease; she hopes research will “figure out how kids like me get it.”

Though the challenges of scleroderma persist, so does Kate. As she says, “Most people assume because I suffer from this disease, I’m fragile. I’m not.”