“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 I mentioned to my PCP that I had puffy fingers, which he ignored,” she explains. “I complained to the RN again and she was able to get some labs ordered.”
For months, Vaneeta received repeated bloodwork and endured uncertainty, as her local rheumatologist wasn’t able to provide answers. Finally, in March 2020, after traveling to Mass General Hospital in Boston, she received a diagnosis: diffuse cutaneous scleroderma.
“It’s hard to be an independent person and have to give up all those simple daily tasks, the individual freedom that, when healthy, we take for granted,” she says. “It’s mentally debilitating.” Her husband retired early to help with day-to-day needs, and together they made the decision to move to Texas, where the warmer climate helps ease joint pain, stiffness, and skin irritation.
“I’ve learned that I have a high tolerance for pain. Even though I’m disabled, I’m still able to contribute to society,” she says. “I have also learned that I’m impatient, but I’m working on it. And I’ve learned how lucky I am to have the love of my family and friends.”
That sense of resilience fuels Vaneeta’s belief in the power of research to change lives. “Research is extremely important as there is no cure for my disease,” she explains. I’m praying and hoping for something that will cure this nasty disease one day soon,” she says. “No one should have to live in pain like this. It’s a very, very cruel disease.”
We’re so grateful to Vaneeta for sharing her story. At the Scleroderma Research Foundation, we share her passion for advancing research and improving lives of people living with scleroderma. Learn more about how our research program is bringing us closer to a world without scleroderma below.
