“My story with Scleroderma has been a silent one,” says Carmen (dx 2014). “I have always been very active and it was very difficult to notice my symptoms until they had already progressed.”
Carmen’s earliest symptom was Raynaud’s phenomenon, which appeared unexpectedly during her third pregnancy. “When I had my child, he was born by C-section because my circulation had started to fail and I could not walk,” she recalls. “During my first shower after his birth, my hands, feet, and nails turned purple, and I panicked—that was my first unknown symptom.”
Nearly four years later, new and more alarming changes began to surface. “My face had begun to look very gaunt and tight, my mouth had lost its shape, I lost a great deal of weight in a very short time, and my hair was falling out,” she shares. “I went to my doctor, and upon seeing me he diagnosed me practically just by looking at me. It was the face of scleroderma.”
The diagnosis finally brought her answers, but also made Carmen experience an entirely new reality. “My life changed overnight,” Carmen says. “There was now a mountain of symptoms, all with names: pulmonary fibrosis, PAH, and a great deal of fear upon learning that this is lifelong.”
Rather than surrender to her fear, Carmen decided she needed to become informed and resilient. “I educated myself about the disease, and most importantly, I learned to ask for help from my family and friends without feeling ashamed,” she explains. “The most important thing for me has been learning to say NO, THANK YOU without guilt when my body speaks to me.”
And through it all, Carmen has managed to find a silver lining through her diagnosis. “Scleroderma has left a positive mark on my life,” she says. “It brought wisdom to me ahead of its time, gave me a positive sensitivity, heightened my awareness, and deepened my love of nature.”
For Carmen, the urgency of research and awareness is deeply felt. “Research into scleroderma is the most compassionate and humane thing that scientists, doctors, and donors can do for us,” she says. “We urgently need a targeted treatment for this disease that can slow so many of its symptoms and give us a better quality of life.”
Carmen’s experience is a reminder of why this month matters. June is Scleroderma Awareness Month, and stories like hers are exactly why we #SayScleroderma. Too many people are diagnosed too late. Too many are living with a disease the world still doesn’t know enough about. That has to change.
Ready to make an impact this Scleroderma Awareness Month? Learn more about #SayScleroderma, get involved, and help us reach farther than ever before.
