For Sophie Anne, scleroderma is “the disease I have been diagnosed with, but it doesn’t change who I am.” She says, “It is important for me to stay active,” and participates in ballet, jazz, acrobatics, and soccer. Like many children this past year, she attended school via remote learning, “but now I am back in school, and I love it. I like being with my friends.”
This time last year for Scleroderma Awareness Month, Sophie Anne shared what it was like to be an eight-year-old living with scleroderma. Now at age nine, she’s excited to share what’s new, the adjustments she’s made to manage her symptoms, and how her whole family supports her.
She’s also learned more about how to manage scleroderma. “I put my bed up on risers to help with reflux and it works!” Sophie Anne says. Other challenges from last year, like new medications and medical testing “have become more routine.” For her Raynaud’s, she says, “I keep mittens with me all of the time at school.”
Support is essential when living with scleroderma and Sophie Anne’s family provides this for her. Her parents, Jeff and Martha, explain how “the diagnosis forever changed us and how we face each day.” Her sisters, Kate and Lily, describes her as “positive” and “brave,” respectively. Ultimately, they all agree that advancing awareness and research is key to helping Sophie Anne and everyone living with scleroderma. To Sophie Anne, research means “finding a cure. I am still young and I really want a cure to be found.”
Join Sophie Anne and her family. Help raise awareness and #SayScleroderma.