“He is a DIY guy with a degree in electric engineering, so there really wasn’t anything he couldn’t do! He was in the peak of health and felt incredible,” says Naomi W. of her husband Stephen (dx 2025). “Then, at the beginning of last year, something changed.”
“His hands became extremely painful and sensitive to the cold,” she recalls. “His right wrist started aching terribly, and he had neuropathy in his lower legs.” When a high ANA test indicated an autoimmune disease, the couple searched for a rheumatologist, but none practiced nearby. A last-minute appointment in Salt Lake City led to answers in early March: Stephen had rapid-onset diffuse systemic scleroderma.
“If we had not been so diligent at educating ourselves, learning the phrases, and asking questions, I fear Stephen would not have recovered like he has,” Naomi shares. “With scleroderma, it is all so connected, and we had to make sure each doctor understood the whole picture.”
“It became very apparent that the doctors were not experienced in handling such an extreme case of scleroderma,” says Naomi. Over the following months, Stephen faced pneumonia, interstitial lung disease (ILD), and heart complications, spending weeks in the hospital and in skilled nursing.
In January 2026, Stephen’s treatment finally began to take hold. “His lungs have gotten better. He no longer needs oxygen unless he is exerting himself,” she shares. “The Raynaud’s has still been a constant struggle, but he has been slowly building back his strength.”
“He decided that he would not let scleroderma take him, and he has fought as hard as he possibly could,” says Naomi. “Lately, he has been back at our home in rural Utah, climbing up into his tractor to get things done, and feeding the horses and goats.”
These days, the couple are ardent supporters of research. “The research is so incredibly important, because the doctors we came across knew so little,” she says.
We are so grateful to both Naomi and Stephen for sharing their story. Discover how the SRF is advancing research to improve the lives of people living with scleroderma at the link in the first comment below.
