For Caryn I. (dx 2023), making a planned gift to the Scleroderma Research Foundation was more than just a financial decision—it was an investment in hope for a future without scleroderma. “I chose to make a planned gift to the SRF as I am hopeful for the research that they are doing to progress further along,” she says. “Research projects, clinical trials, collaborative efforts, etc. all combined will be very impactful to achieve the ultimate end goal of finding a cure.”
Caryn’s experiences with scleroderma began with a series of upsetting symptoms. In early 2022, she started experiencing tightness in her calves, swollen fingers, and soreness in both hands.
These symptoms, along with testing for carpal tunnel syndrome, eventually led her to a confirmed diagnosis of Raynaud’s and scleroderma in late 2022. More extensive testing in January 2023 revealed that Caryn had diffuse cutaneous systemic sclerosis (dcSSc), a more severe form of the disease.
“Initially, I had never heard of scleroderma. Then I started consulting Dr. Google, which obviously was a mistake,” she recalls.
Despite the physical limitations brought on by scleroderma like losing dexterity and flexibility in her hands and having to give up bicycling—Caryn refuses to let the disease define her. These days, she focuses on staying positive, embracing her love for jazz music, collecting shoes, and enjoying chocolate. “I try to live my life with me in control, not scleroderma,” she explains.
As someone living with scleroderma, Caryn is deeply invested in the need for continued research. “Selfishly, I want a cure to be found,” she says. “The SRF’s efforts give me hope. They tell me it’s not all gloom and doom for those of us living with scleroderma.”
It’s this drive for progress that led Caryn to make a planned gift to the SRF. “A planned gift will help advance the research needle along faster,” she says. “This is of utmost importance for the generations of today, tomorrow, and future generations to eradicate this disease.”
“I sincerely hope that one day the SRF will no longer exist, as that means a cure has been found and the need for research will no longer be needed,” she says. By making a planned gift, Caryn is helping to make that vision a reality.
