“Being diagnosed with interstitial lung disease has completely reshaped my life—physically, emotionally, and mentally,” Paul shares. “It’s frustrating, sometimes heartbreaking, to feel your body no longer cooperate the way it used to.”
Paul’s journey began in December 2016, during a ski trip. He noticed his hands turning white and dark blue in the cold. When the discoloration persisted, his primary care doctor diagnosed him with Raynaud’s phenomenon and ordered blood tests to determine if it was primary or secondary.
While waiting for results, Paul began experiencing shortness of breath while hiking. “I could barely walk 100 feet without stopping for a break,” he recalls. By July 2017, he had been diagnosed with systemic scleroderma (SSc). A lung biopsy confirmed the presence of interstitial lung disease.
Before ILD, Paul lived an active life, which included running, biking, skiing, and hiking.“Being athletic was part of my identity,” he says. “I never imagined a day when walking across a parking lot could feel like an endurance event.”
“Every breath takes effort. Every outing needs planning. It’s not ‘just being tired’—it’s like my body is working double-time just to do what used to come naturally,” Paul explains. “And while you can’t see it, there’s an emotional side, too. There’s grief for what I’ve lost, and frustration when others don’t understand why I can’t ‘just push through.’”
“What once felt like routine, everyday activities, walking up stairs, carrying groceries, or simply taking a deep breath, now require effort and planning,” he says. “Fatigue and shortness of breath have become constant companions, forcing me to slow down and reevaluate my priorities.”
These days, Paul is passionate about scleroderma research. “With encouragement from the SRF, I’ve seen pharmaceutical companies take an interest in developing treatments for people with SSc and ILD,” he says. “Along with the CONQUEST clinical trial program, I think we’ll see real progress,”
“Living with ILD is not easy,” Paul reflects. “But it has taught me resilience, gratitude, and the importance of living deliberately.” Thank you, Paul, for sharing your story and helping shine a light on the realities of living with ILD.
Be sure to join us at our ILD webinar on September 16 to learn more about ILD in scleroderma—its impact, how it’s diagnosed and treated, and the progress being made in research.
