“When I first received my diagnosis, I made a commitment to be involved in research, advocacy, and awareness,” says Charles, who was diagnosed with diffuse systemic scleroderma in April 2025.
And this Scleroderma Awareness Month, he meant it. Charles worked with the Ipswich Select Board to secure an official proclamation recognizing June as Scleroderma Awareness Month in his community. He also partnered with a local business to mint a limited edition series of scleroderma awareness challenge coins. Those coins have raised both awareness and funds for the Scleroderma Research Foundation, and have even been presented to sports legends Pedro Martinez and Aerin Frankel.
Charles’ journey to diagnosis began in December 2024. “I started experiencing intense nerve pain and carpal tunnel syndrome in my hands and arms, as well as nerve pain in my feet,” he recalls. “I also had achy joints, increasingly swollen hands, Raynaud’s syndrome, pigmentation changes, and GI symptoms.” After numerous office visits and extensive testing, he received his diagnosis just months later.
“My diagnosis shifted my focus to what’s truly important in my life—my family and my faith, and to focus on the good in things,” he shares. But the physical challenges are real. “My work requires me to be fit and active, and my scleroderma symptoms often present challenges.”
What drives Charles to keep showing up is personal. “I have been an EMT for 20 years and up until my diagnosis I had never heard of scleroderma,” he says. “For me, my diagnosis is an opportunity to help more people learn about and understand this disease and to garner support and raise awareness.”
“I #SayScleroderma because it is an opportunity to bring awareness to this rare condition,” he says. “I want to help those of us with scleroderma live the most fulfilling lives possible.”
Thank you, Charles, for turning your diagnosis into action and for inspiring your entire community to #SayScleroderma. This month, we’re asking you to do the same. Join us, raise your voice, and help bring us closer to a cure for scleroderma.
