Three generations of Susan McCue‘s family have been impacted by pulmonary fibrosis. When diagnosed, she committed to learning as much as possible to cope.
Coming from a large, close-knit Irish American family, Susan McCue has a strong support system. However, over the years, that system has been strained by loss. Of her nine siblings, McCue lost a brother and a sister to pulmonary fibrosis (PF), the progressive and debilitating lung disease her life now revolves around.
PF causes scarring in the lungs, and while there are treatments to slow the progression, there is no known cure. McCue has a familial form of PF, and that’s why she is doing everything she can to learn about the disease, where to find the best care, and what research studies she can join. With family members in every region of the country, McCue has shared the medical centers affiliated with the Pulmonary Fibrosis Foundation’s nationwide Care Center Network that specializes in treating PF and interstitial lung disease (ILD).
Resources and support are available
Living with pulmonary fibrosis is challenging but resources and support are available. “When my sister was first diagnosed with this disease, I went to Google to learn more about it, like many people do,” McCue said. “Pulmonary fibrosis is not the same for every person, and it’s important to find information you can trust.”
Fortunately, Susan discovered the Pulmonary Fibrosis Foundation (PFF) website, which she uses for educational videos, fact sheets, and clinical trials. She also follows PFF on social media for news and stories about people living with the disease.
“I want to learn as much as I can about PF to help family members who may face this disease in the future,” McCue said. “It can be overwhelming, but there is an incredible community of patients and caregivers who participate in support groups, fundraising walks, and events that allow us to share our journeys with one another.”
McCue encourages anyone impacted by PF or ILD to connect with the PFF. The PFF has a dedicated resource for newly diagnosed patients that helps them navigate various aspects of the disease that they can explore at their own pace — a virtual program titled “First steps for people diagnosed with PF,” which can be found on the PFF website, pulmonaryfibrosis.org.
“Knowledge is empowering, and support is essential,” McCue said. “There are things you can do to improve your quality of life with PF. Reaching out is the first step.”
