“Scleroderma research is important to me because our lives would be drastically different without the progress made thus far,” says Tiffani P. (dx at age 18.)
“At first, it was a small symptom, acid reflex. It started to get progressively worse over months, to the point I was terrified to eat or drink anything,” she remembers. Later, Tiffani noticed Raynaud’s Phenomenon in her hands—“the first symptom that I really considered something was seriously wrong with my body.” With the help of her stepmom, a nurse who recognized the signs, she was able to find the a specialist who gave her an official scleroderma diagnosis.
“Scleroderma has really changed the way I live my life,” Tiffani says. “It makes every day living more difficult than before but with the right tools, resources, and help, life can be achievable.”
The disease has taught her how to ask for help, though she describes how it isn’t always easy. “My husband has been with me for most of the journey,” she says. “I had to find a way for him to help me without making me feel like I am losing my independence and ability to perform day-to-day tasks.”
Throughout her scleroderma journey, she has fought to keep her positive outlook. “I am still very independent and strong. I fully believe that every day you wake up is a gift and you need to take advantage of your opportunities,” she says. “Every day we have a choice to continue our path or start a new one. Whatever path you take make sure it makes you happy.”
Tiffani believes that every step forward in research makes a difference. “If research can continue to move forward, it can explore different avenues for improving our lives and the lives of those who come after us,” she says. “Each small discovery can add up to a major achievement for the field.”
We are grateful to Tiffani for sharing her story and perspective with the scleroderma community.
