“My experience with interstitial lung disease (ILD) didn’t start with a diagnosis—it started with a feeling,” Joseph W. recalls. “Back in middle school, around 2009, I was active in sports and began noticing that I’d get winded faster than my peers. There was also a strange, subtle tightness around my torso that I couldn’t quite explain, but I learned to push through it. For years, these symptoms were relatively easy to dismiss.”
It wasn’t until 2019, when Joseph was diagnosed with systemic sclerosis, that ILD entered the conversation. “My rheumatologist referred me to a pulmonologist early on, but the emotional weight of the diagnosis was overwhelming. I was just beginning pharmacy school, and I wasn’t sure I could even continue,” Joseph explains. “Rather than risk being derailed, I chose to delay the pulmonary consult.”
That choice bought him time, but not clarity. “It would be another year and a half before I finally saw a pulmonologist follwing stabbing chest pains from a COVID-19 infection,” he says. “Imaging revealed inflammation and fibrotic scarring—finally giving me a name for what I was experiencing for over a decade.”
Living with ILD has added new complexities to Joseph’s scleroderma journey. “The physical symptoms—shortness of breath, pressure in my chest, reduced lung capacity—are challenging, but so is the emotional toll of knowing it was there all along,” he says. “My hope is that patients like me are met with earlier screening, deeper listening, and greater awareness that lung involvement can exist long before it shows up on a scan.”
Joseph’s story with ILD is intertwined with his identity as both a patient and a healthcare professional. Now a practicing pharmacist, he reflects: “That long ‘gray zone’ of uncertainty that I experienced deeply shaped my understanding of what patients endure before clarity, and it continues to inform the way I approach healthcare.”
His experiences also inspired his upcoming debut book, The Practicing Patient: A Pharmacist’s Resilient Journey with Autoimmune Disease, which explores his dual perspective. “I’ve learned that my voice matters, both as a patient and as a professional,” Joseph says.
That conviction drives his advocacy. “I want to amplify the patient voice in ways that create ripple effects—whether that’s enabling patients to share their stories more confidently, or ensuring that my counterparts in healthcare approach conversations with empathy and a whole-person perspective.”
Research is central to Joseph’s vision. “Research is the vehicle that transforms lived realities into better outcomes. Each advance not only holds the promise of more effective therapies but also validates the patient journey by saying, ‘Your story mattered enough to inspire progress,’” he explains. “For me, supporting research is inseparable from amplifying patient voices—it helps pave the way so that no one has to wait as long as I did for answers, and that their path forward is guided by both science and empathy.”
We are grateful to Joseph for sharing his story about his experiences living with ILD and scleroderma, as raising awareness is key to advancing research. His journey underscores the importance of better understanding this disease.
Whether you’re living with ILD or supporting someone who is, our free ILD Webinar on September 16 at 9 AM PT / 12 PM ET offers expert insights on scleroderma and ILD, screening and diagnosis, treatment options, and more.
