After her scleroderma diagnosis, Tatiana B. (dx 2020) knew she wanted to help move research forward. A recommendation from her rheumatologist led her to enroll in CONQUER.
“I feel deeply grateful to be part of the CONQUER registry for scleroderma,” she says. “Being included in this study gives me comfort and a sense of purpose, knowing that my experiences may help others one day.”
Created by the Scleroderma Research Foundation (SRF), the CONQUER Registry is the first nationwide, long-term scleroderma research registry in the U.S., designed to track the health of people living with scleroderma over many years. By collecting clinical data and biosamples during routine clinic visits, CONQUER helps researchers better understand how the disease progresses and what leads to more personalized, effective therapies.
For Tatiana, joining CONQUER has become a meaningful way to support progress in understanding the disease. “This research plays an important role in improving our understanding of the condition and what can be done to create better treatments in the future,” Tatiana says.
Her journey began more than ten years ago, when she first experienced symptoms in her esophagus, including difficulty swallowing, discomfort, and consequent digestive issues. At the time, she was diagnosed with Barrett’s esophagus, but no one connected her symptoms to scleroderma. It wasn’t until 2020, after she experienced a period of intense hair loss, that she took an ANA test. “The result finally showed that I had systemic scleroderma and I received an official diagnosis,” she says.
Living with scleroderma has taken a toll on her mental health. “Physically, in my daily life, it did not change so much. But emotionally, it devastated me,” Tatiana explains. “I was taken by a deep and intense insecurity that is still with me and probably will always be part of my life.”
Through these challenges, she has discovered a strength she didn’t realize she had. “I am much stronger than I ever thought,” Tatiana says. “I also learned that resilience can be something powerful that I can use in my favor.”
Now, she believes deeply in the importance of scleroderma research. “There are many people living this journey of discovery and overcoming challenges,” she says. “For this reason, it is very important to work for research and development, so we can have earlier diagnosis, better treatments, and hopefully one day, a cure.”
Her participation in CONQUER is a way she hopes to make a difference for others living with scleroderma. “CONQUER helps doctors and scientists learn how scleroderma affects people in their daily lives and what can be done to create better treatments in the future,” she says. “By sharing my experiences, I feel that I am contributing to something meaningful and helping move research forward.”
Thank you, Tatiana, for sharing your experiences and for participating in CONQUER.
