“I think one year in my early 20’s I went to the ER a total of 33 times because I wasn’t receiving help and didn’t know where to turn to,” Emily R. (dx 2019-20) says of her initial journey to receiving a scleroderma diagnosis.
Emily had lived with symptoms since childhood—but like many others in the scleroderma community, she went undiagnosed for years. “I did relinquish and gave in thinking it was in my head,” she says. Finally, a rheumatologist appointment led her to receiving a scleroderma and Hashimoto’s diagnosis.
“Once I learned my diagnosis, it was like something switched in my brain,” Emily says. “I realized there were so many things I wanted to accomplish before it was my time.”
And she has: Emily recently earned her BSc in Nutritional Sciences with a concentration in dietetics from University of Connecticut and was accepted into the PhD program in the same department.
“I have a love and passion for nutrition,” she says. “I think nourishment is important for any state, but especially chronic illness and malnutrition states, and I am a strong believer in individualized approaches to nutrition, because it is not ‘one size fits all.’”
She’s determined to give back to the scleroderma community by sharing what she’s learned. “Someday I would like to offer educational information to help my fellow warriors,” Emily says.
Living with scleroderma has also been transformative in unexpected ways. “It really has given me a sense of family and community that I didn’t know I needed, ” she says. “I have met some amazing people and learned so much.”
And her experiences have taught her not just about nutrition—but about herself. “I am more than this disease and its effects on my body. I am a wife, a dog mom, a researcher, and a lover of academia,” Emily says. “Living with scleroderma has allowed me to believe more in myself than I ever thought possible.”
When asked why scleroderma research matters to her, her answer is simple: “There are a lot of people I care about that I would want to have long happy lives and no longer suffer because of this chaotic, disruptive disease.”
Thank you, Emily, for sharing your story. The Scleroderma Research Foundation (SRF) is laser-focused on fund innovative research that advances understanding of this challenging disease to help people like Emily—and everyone living with scleroderma.
