“I’ve learned that I’m stronger and more adaptable than I gave myself credit for,” says Bri S. (dx 2020). “A lot has had to change since scleroderma forces you to be patient, to advocate for yourself, and to listen closely to your body.”
When early symptoms appeared for Bri, she didn’t immediately realize something was wrong. “The signs started showing up way before I received a diagnosis,” she recalls. “I noticed significant fatigue, my hands would swell up, and Raynaud’s episodes began happening more frequently. But those symptoms can be brushed off as stress or poor circulation.”
As time went on, she knew it was something more. After a series of tests and appointments, she received a diagnosis of CREST Syndrome in 2020.
“It was overwhelming at first,” she recalls. “But having a name for what I was feeling helped me move forward.”
Since then, Bri’s life has changed in meaningful ways. “It’s taught me to pace myself. I’ve had to adjust how I spend my energy and how I care for my body day-to-day,” she explains. “But what’s shifted the most is my mindset. I no longer put off joy or wait for the ‘perfect time to do something I love. I try to maintain a balanced lifestyle without over-focusing on my diagnosis, since I want to live well every day.”
That mindset inspired Bri and her husband to reconnect with their shared love of the sea. “We had fun sailing adventures in our twenties, and that love never left us. After my diagnosis, it reminded us that you never know what’s ahead—so we decided to live fully now, rather than waiting for someday,” she says. Since 2020, they’ve sailed throughout the Pacific Northwest and are currently making their way down the West Coast toward Mexico.
For her, scleroderma research represents a better future. “Research gives me hope,” she says. “There’s still so much we don’t know about this disease—what causes it, how to treat it more effectively, how to stop its progression.”
“Research brings us closer to better treatments, earlier diagnoses, and maybe one day, a cure. It matters to me not just for my future, but for everyone living with scleroderma,” she says.
Thank you, Bri, for sharing your story. Like Bri, at the Scleroderma Research Foundation (SRF), we believe research is the key to a better future for everyone affected by scleroderma. Learn about our Research Program below.
