01/19/2026
“I like to think of myself lucky in my unluckiness with scleroderma,” Cindy D. (dx 2023) says. “I’m thrilled to have done CAR T and have this chance. I hope my data will add to the body of knowledge and help other scleroderma warriors.”
Cindy’s path toward CAR T began long before treatment. Her journey with scleroderma began in October 2018. “I was cooking one night and I felt my hand go numb as it grasped a pot handle,” she said. “I looked down and it had distinct bright white fingers.”
At first, her doctor didn’t think it was an autoimmune condition. “I didn’t have other symptoms at first,” Cindy said, and it wasn’t until the summer of 2021 that she finally had an ANA test. “That came back very high with also a very high Scl-70.”
By then, she was experiencing tendon injuries and fatigue, but getting concrete answers wasn’t easy. “I read about scleroderma, and of course found nothing but upsetting information,” she explains. “But doctors would hesitate. The local general rheumatologist would not diagnose without tight skin.”
Determined to advocate for herself, Cindy improvised. “I actually took my own capillaroscopy images with my grandson’s toy digital microscope,” she said, which later helped confirm abnormal nailfolds. In 2023, a scleroderma center confirmed diffuse cutaneous systemic sclerosis and early interstitial lung disease.
Living with scleroderma has caused significant changes in Cindy’s life. “A serious systemic illness becomes the ‘elephant in the room’ for all life activities,” she says. “It is almost always on your mind and everything needs consideration.”
“I think I grieved the most for my lost running and cycling,” she says. While hospitalized for CAR T therapy, nurses asked her to write daily sentences. “Many days I wrote something like, ‘I wish I could run again,’ or ‘I hope I can run two miles next summer.’”
As she searched for answers, emerging CAR T research gave her hope. She followed early studies closely and connected with others doing the same. “We really kept our ears to the rails so to speak," she says. "We joined various conferences and made personal contacts with some of the early pioneers working in the field, and tracked the pharmaceutical companies trialing CAR T for autoimmune.”
That persistence led her to become the first patient enrolled in a CAR T clinical trial from the second sponsor to launch a study in scleroderma. “It was not an easy procedure, but the doctors and nurses were outstanding,” she says.
Now, more than 15 months later, Cindy remains in remission, and continues to improve. “Even my Raynaud’s is getting better,” she shares. “Most everything else is close to normal.”
Why research matters is clear to Cindy. “The answers are out there,” she says. “Researchers and doctors dedicated to this horrific disease are true heroes. We are in a medical revolution with cellular therapies already saving lives.”
We are deeply grateful to Cindy for sharing her story and for contributing to research that will help others living with scleroderma. Learn more about how we are advancing scleroderma research toward a cure on our website: https://bit.ly/4f5K49y
