“I was diagnosed with lupus in 2003, and I attributed all these weird things happening to me to my lupus,” Yvette T. (dx 2016) says. For years, symptoms like Raynaud’s, Sjögren’s, fatigue, and muscle and joint pain felt explainable, until new and more serious issues began to surface. In 2016, she developed GI problems, which led her to visit a specialist.
“A couple weeks later, my follow up to go over my test results was very life changing,” she says. After extensive testing, Yvette was initially diagnosed with primary biliary cholangitis, and soon after, doctors suspected scleroderma. Following weeks of additional tests and a hospital stay, she was officially diagnosed with scleroderma, and pulmonary arterial hypertension (PAH) and Stage 4 kidney failure—an overwhelming moment that reshaped her understanding of her health and future.
“Scleroderma has taken over my wellbeing,” she says. “The biggest change for me to accept is my appearance.” Scleroderma has affected her skin, energy, and physical abilities in many ways, bringing extreme fatigue, weight loss, breathing difficulties, chronic pain, dizziness, and nausea. Activities she loves now require careful planning and long recovery times, and everyday tasks can be difficult.
“When you are living with scleroderma, you learn so much about yourself,” Yvette says. Through managing flares, protecting against Raynaud’s, adjusting her diet, and navigating chronic illness, she has developed deep inner resilience. “I really want people to know how much we suffer from this. Having an autoimmune disease is not for the weak.”
With her background working in healthcare, Yvette sees scleroderma not just as a personal diagnosis, but as a larger challenge for medicine to solve. “This disease is so rare, and we need to find a cure for future patients,” she says.
“I always want to be someone to motivate my fellow scleroderma brothers & sisters,” she says. “I would love to be able to inspire our community because this is a hard illness to go through.” By sharing her journey, Yvette is doing exactly that—offering encouragement, understanding, and hope to others navigating life with scleroderma.
We are grateful to Yvette for sharing her story and helping raise awareness within the scleroderma community. Stories like hers underscore why continued research and support matter.
