“I’ll forever be grateful for an early diagnosis,” says Alex P., who was diagnosed with both scleroderma and interstitial lung disease (ILD) earlier this year in 2024. “I am lucky. My PCP listened, and I had a rheumatologist who took me seriously.”
In December 2023, Alex started experiencing numbness and tingling in her fingers and toes, which she initially dismissed. “I ignored it at first,” she recalls, “But as it persisted, I went to see my PCP.”
Her doctor suspected Raynaud’s phenomenon and began treating Alex for low B12. It wasn’t until she noticed her fingers changing colors that the Raynaud’s diagnosis was confirmed. By January, Alex began experiencing joint pain in her hands, which soon spread to her entire body. After being referred to rheumatology, she received a different diagnosis in April: scleroderma with early-stage ILD.
Living with ILD has brought additional challenges, like a persistent cough and increased fatigue. “It’s overwhelming to be told you have lung disease—terrifying, really. But with medication and patience, it can be manageable.”
Scleroderma has deeply impacted Alex’s life, both physically and mentally. “The hardest thing for me has been the mental toll of the diagnosis. I don’t feel like the same person I used to be,” she says. “I have to work every day to not let the diagnosis define me and my life. Like Dory, you just keep swimming—you don’t give up.”
These days, she is passionate about raising awareness. “I want scleroderma to be a word people know,” Alex says. “When I was diagnosed, I had to educate everyone around me. I want the next wave of people diagnosed to not have that burden.”
For Alex, advancing research is a vital step toward better treatment and understanding of scleroderma. “Scleroderma is rare, which means fewer treatments. I would love to have more options, and research is the key to that,” she says. “Understanding what causes scleroderma could help prevent others from living with this disease.”
We are deeply grateful to Alex for sharing her story. This ILD Day, we invite you to join us in spreading awareness around this condition. Learn more about how you can get involved and support the cause.
Pictured: Cider (left) and Alex P. (right)
