Amy began her lifelong journey with lung disease when she was just a teenager, and her doctors diagnosed her with systemic scleroderma. This rare autoimmune disease is known to have respiratory complications, and further testing, including a high-resolution CT scan, confirmed the presence of pulmonary fibrosis and interstitial lung disease (ILD).
For years, she managed her condition with careful monitoring and routine testing. She had very few symptoms and found she could exercise and lead a relatively normal life. But about a decade later, new symptoms began to emerge. “I started feeling breathless doing things that never used to bother me,” Amy says. “I began needing to stop mid-flight when climbing the stairs. And walking uphill made me feel like I’d run a marathon instead of walking half a block.”
Her doctors discovered an enlargement on the right side of her heart, and further testing confirmed pulmonary arterial hypertension (PAH)—a serious and rare condition where high blood pressure affects the arteries in the lungs and the right side of the heart. As her disease progressed, Amy’s ability to stay physically active became more limited. “I stopped going to the gym because it was too hard,” she says. “Now I use a scooter, and I can only walk about a block or two.” This forced sedentary lifestyle was especially difficult because Amy was only in her 20s and she found herself unable to do things other people her age could do.
Learning to Manage Breathlessness
Instead of giving up, Amy found new ways to manage her energy and daily routines. She participated in pulmonary rehabilitation, a program that teaches people how to breathe more efficiently and conserve energy. “Pulmonary rehab helped me understand how to move my body differently,” she says. “I learned when to push my body and when not to, and how to breathe in the most efficient way. Just learning how to utilize your body in a different way was so helpful.”
She also worked closely with her healthcare provider to determine the best way to manage her symptoms. She takes several medications, including a biologic, to support her breathing and other medicines for pulmonary arterial hypertension. She watches her diet, keeps her salt intake low, and attends physical therapy twice a week. “I try to balance my life,” she says. “If I know I have an event coming up that may be more strenuous than my normal day-to-day, I rest up the day before so I can have enough energy.”
Becoming an Advocate by Building Community
For many years, Amy kept her illness private. “When I was first sick, I was embarrassed and angry,” she recalls. “I didn’t want anyone to know.” But as she grew older, she realized that sharing her story could help others feel less alone. She joined local support groups and eventually realized that there were plenty of programs for older adults, but not for young adults like her. So, she decided to create one herself. Her virtual support group, called SYNC (Scleroderma Young Adult Network and Community), continues to thrive through the National Scleroderma Foundation.
She also dove into advocacy to give a voice to patients with PAH. For the past 15 years, she’s spoken at conferences, participated in panels and even lobbied on Capitol Hill for patient-centered legislation like the Supplemental Oxygen Access Reform (SOAR) Act. “I felt it was my duty as someone living with lung disease,” she says. “Patients deserve to be heard.” That passion eventually led her to the American Lung Association, where she not only contributes to awareness efforts, but also helps maintain important patient resources. “Being an advocate for lung disease and scleroderma has really opened a lot of doors for me. I have been able to travel and speak with people I would have never met,” she explains. “Working with the Lung Association has broadened my horizons and taught me more about lung disease and lung health, and I have loved every second of it.”
Lessons Learned from Living with PAH
Despite the physical limitations and many health setbacks Amy has encountered, she continues to be positive and finds ways to live a full and joyful life. A creative person at heart, she enjoys quilting, painting and writing whenever she is not advocating. “If you can remain positive, you’ll find that though it’s not the same life you had before, it can still be amazing and enjoyable—just different,” she says.
Along the way, one of the biggest lessons she has learned is self-compassion. “I’ve had to give myself grace,” she says. “If I can’t go to every family event or take every trip, that’s okay. I’ve learned not to feel guilty and instead focus on the things I can do.”
Additionally, she encourages anyone with lung disease to advocate for themselves and take an active role in your disease management. “Ask questions. No question is dumb. Understand your treatment plan and how your body responds. Being involved in your care makes a huge difference.”
Most importantly, Amy wants anyone with lung disease to know they are not alone. Support communities, both online and in person, are a great way to meet people who are going through the same thing you are. “Friends and family can be supportive,” she says, “but it helps to talk to someone who truly understands what it’s like to live with lung disease. Having that kind of connection can make all the difference.”
Blog last updated: December 9, 2025
