“Making information about scleroderma accessible to children and the public is very important to me,” says Alvin, C. (dx 2017). His determination to educate others led him to write a children’s book, #SclerodermaInTheAnimalKingdom, designed to help young readers and their families understand the condition through engaging stories and relatable characters.
Alvin’s journey with scleroderma began unexpectedly in December 2016 when his classmates pointed out that his skin was getting darker. At first, he didn’t think much of it, but by January 2017, his symptoms had intensified to joint pain and significant weight loss. “This made us go to the ER in February 2017, where I was first diagnosed with arthritis,” he recalls. After undergoing more tests, Alvin was told he had mixed connective tissue disease. It wasn’t until later that he received the final diagnosis—systemic scleroderma.
“Scleroderma has changed my life completely,” Alvin says. “I can’t hold anything, I can’t walk, and I can’t do most things.”
Despite these immense challenges, Alvin discovered his own resilience. “I’ve learned that I can feel weak, but I am strong. I can sometimes feel hopeless, but I am hopeful. The most important thing I’ve learned is that if I keep going, things can get better.”
His desire to support the scleroderma community led him to write his book. “I believe that raising awareness is key to building a supportive community,” he says. “Together, we can make a positive impact for everyone affected by scleroderma.”
For Alvin, the hope for a cure drives his support for scleroderma research. “Scleroderma research is vital because it holds the key to changing our lives for the better,” he says. “Each study and discovery brings us one step closer to finding a cure—the cure we’ve all been praying for. I truly believe that with continued research, that day will come.”
Thank you, Alvin, for sharing your story and for your dedication to raising awareness for scleroderma. If you’re interested in helping raise awareness for scleroderma, consider joining the SRF Cure Crew, a grassroots volunteer program that unites members of the scleroderma community to make an impact in the search for a cure.
