“I didn’t start to notice symptoms until some time after being diagnosed,” says Lisa A. (dx 2017). “I attributed some shortness of breath when climbing steps and such as a lack of activity.”
ILD Day is just around the corner, and we are shining a light on this severe and common complication of systemic scleroderma. ILD, or interstitial lung disease, is a serious complication of scleroderma that causes scarring in the lungs and makes breathing increasingly difficult.
“When I was diagnosed and did my first walking test, I quickly realized the signs were there all along,” Lisa says. “It was easy to dismiss a symptom as something else.”
“Living with ILD has changed things,” she says. “I’m aware of my breathing, how I feel, and even my oxygen levels when doing things—from simple house cleaning to walking up stairs to walking as part of an exercise routine. I’m definitely aware of how weather and location affect my breathing, and more nervous about getting sick and what kind of damage is being done with each cold I get.”
“I wish folks even knew what ILD was,” Lisa says, “There’s no reversing it or ‘fixing’ it, and that a simple cold can easily turn into pneumonia or bronchitis. Even going to the ER, things can get missed because our X-rays are harder to interpret.”
That reality has shaped how she moves through her own life. “I’ve learned that it’s okay to not do things I feel are risky, while also finding things that safely push my limits,” she says. “I treat my lungs like a muscle and work them out as much as possible.”
These days, she is an avid supporter of scleroderma research. “I hope of finding treatments and solutions that don’t stop our lifestyles,” Lisa says, “I had never heard of scleroderma until I was diagnosed, and I hope others diagnosed in the future are at least aware of it.”
Thank you, Lisa, for sharing your story and helping raise awareness around SSc-ILD. Want to learn more about SSc-ILD? Join Dr. Toby Maher for an in-depth webinar ahead of ILD Day on September 15. Learn more and register at the link below.
