“My focus is finding new ways to live the fullest life possible and to be grateful for daily wins, no matter how small,” says Lloyd J. (dx 2013).
June is Scleroderma Awareness Month, and Lloyd has made it his mission to make sure the world knows this disease by name.
“It started after a Broncos game,” he recalls. “I noticed my hands stayed cold and swollen far longer than normal.” A referral to a rheumatologist brought answers and a new reality for Lloyd to navigate. By March 2013, Lloyd had a diagnosis: limited systemic scleroderma.
“What I wish someone had told me in those early days was to seek help navigating my personal scleroderma journey, both behaviorally and medically,” he says. In the years since his diagnosis, Lloyd has dealt with a range of debilitating symptoms, including tightened skin, severe neuropathy, burning sensations, and hypersensitivity.
Initially fearful of what was to come, Lloyd decided he was going to devote himself to advocacy, and decided to meet with elected officials to advocate for increased funding for scleroderma research. “I realized I couldn’t just be dissatisfied, and I had to use my story to guide legislators and make change,” Lloyd says. “I support scleroderma research not only to ease daily impacts and improve quality of life, but ultimately because I believe we will find a cure for this disease.”
These days, Lloyd is also a staunch believer in the power of scleroderma awareness. “I #SayScleroderma because we need more provider training and treatment that can lead to wider patient support across the nation,” he says.
June is Scleroderma Awareness Month, and Lloyd’s story is a reminder that increased awareness starts with one person deciding to speak up. We’re honored that he’s sharing his experiences with the community and joining us to #SayScleroderma.
This month, the Scleroderma Research Foundation, the Scleroderma Foundation of California, the Scleroderma Foundation of Greater Chicago, and Scleroderma Outreach Northwest are uniting forces—because when more voices join us to #SayScleroderma, we can get louder and reach farther than ever before.
