“In July 2019, I started to notice my fingers becoming puffy, and suddenly, I couldn’t remove my wedding ring easily,” Vaneeta (dx 2020) remembers. "I had an annual physical and...
Read More
"My mother had a personality that could capture an entire room, and an infectious laugh and charm people were drawn to," says Cecilia D., of her mother, Lynda (dx 1988)....
Read More
“I’m a fighter. I have faith. And I’m going to push to get a doctor that cares to fight for me too," says Sherry D. (dx 2023). This is the...
Read More
“I #SayScleroderma because although it is rare and may feel isolating, it is not one to be alone with," says Ryan M. (dx 2019). "There is a global community that...
Read More
As someone living with scleroderma, Tiffany P. believes in the power of research to drive change. This month, she’s joining us to #SayScleroderma and share why scleroderma research matters to...
Read More
Did you know that 300 million people worldwide live with a rare disease? In this video, Elisabeth K., PhD (dx 2021) shares why she believes that funding research on rare...
Read More
February is Raynaud's Awareness Month, and we’re sharing stories that highlight the real impact of Raynaud’s and scleroderma. In this video, Anita reads a heartfelt letter written by her daughter,...
Read More
For Amy G., creating soft sculpture animals isn’t just an art form—it’s a way to connect and give back. Her whimsical collectible bears have found homes around the world, and...
Read More
"People need to know there is hope," says Cinda M. (dx 2023). "There's always a light—you just need to look for it." Cinda's journey with scleroderma began early last year...
Read More
November is Pulmonary Arterial Hypertension (PAH) Month. To kick off this month, we’re featuring Nola, who candidly shares her journey living with both scleroderma and PAH in this video. "Being...
Read More
