“I wish more people understood how hard ILD is even if we don’t look sick,” shares Amanda H. (dx with scleroderma in 2015). “It’s hard being so short of breath so easily and it really is such an invisible illness.”
Amanda’s journey with scleroderma began way before her ILD diagnosis, when she first noticed symptoms of Raynaud’s at age 12. Years later, after the birth of her daughter, she began to develop fingertip ulcers. “I then went to see my PCP for an upper respiratory infection the winter of 2014 and also had an ulcer at the time, and he recommended that I see a rheumatologist,” she recalls. By the summer of 2015, her doctors returned to her with an answer at last—diffuse systemic scleroderma.
Soon after, doctors confirmed interstitial lung disease (ILD), along with GERD and esophageal strictures. ILD has had a profound impact on her daily life, shaping even the smallest routines. “I have to walk slower than most people, which I know can be annoying for others, but I have to stay at my own pace,” Amanda explains. “Sometimes I get so lightheaded I start to black out and almost pass out, and I have actually fainted a couple of times when that has happened.”
Her health challenges have continued to grow more complex over the years, yet through it all, Amanda has remained resilient. “For a long time, I tried to ignore my suffering and act like nothing was wrong,” she says. “Now, I’m learning to prioritize my health, advocate for myself, and lean on the people who support me.”
Amanda is also determined to use her voice to raise awareness and push for more research. “With scleroderma being such a rare disease, so many people have never even heard of it. I know I hadn’t before my diagnosis. There’s so much about this disease that people don’t see or understand.” she says. “The more people who know about it, the more support there will be for research, and ultimately for finding a cure.”
Thank you so much, Amanda, for sharing your story and for your dedication to raising awareness around scleroderma. Stories like Amanda’s highlight the impact of ILD on daily life and the importance of understanding the condition to better support those living with it.
Whether you’re living with the disease or supporting someone who is, whether you’re living with the disease 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.
