I'm walking for a cure
In 2024, my dad was formally diagnosed with Interstitial Lung Disease (ILD). Looking back, signs of the disease had appeared in his medical records years earlier, but like many patients navigating our fragmented healthcare system, he fell through the cracks.
Everything changed after a frightening week-long hospitalization at Barnes-Jewish Hospital. My dad came home dependent on oxygen, and life as we knew it was suddenly different. As our family adjusted to this new reality, we continued to encounter challenges accessing coordinated care, reliable resources, and support specific to ILD.
As a nurse with a background in care management, I was fortunate to have the knowledge and experience needed to help my dad navigate the healthcare system and access the services he needed. Unfortunately, many patients and families do not have that advantage. Caring for someone with ILD or pulmonary fibrosis often requires constant advocacy. Patients face numerous barriers, from transportation and social challenges to limited insurance coverage for vital services such as pulmonary rehabilitation.
One of the reasons I am proud to support the Pulmonary Fibrosis Foundation (PFF) is their commitment to filling these gaps. PFF provides educational resources, support groups, and free online pulmonary rehabilitation videos for patients who cannot access traditional programs because of cost, transportation, or other barriers.
ILD is considered a rare disease, affecting about 200,000 people in the United States. Despite its rarity, this disease has touched my family in a profound way. Both my dad and my maternal grandmother have been diagnosed with ILD, despite having no known family connection to one another. While we believe rheumatoid arthritis may be a contributing factor, environmental exposures may also play a role.
Having two loved ones affected by this disease has made me deeply passionate about advocacy and ensuring that all patients living with ILD and pulmonary fibrosis have access to equitable, high-quality care. No family should have to struggle to find information, support, or the services they need.
Please consider supporting my PFF Walk fundraiser. Your donation helps provide critical resources, education, research, and support for patients and families impacted by pulmonary fibrosis and other forms of ILD. Together, we can help ensure no one faces this journey alone.
And you can help!
Your gift will power progress in the search for a cure and make a meaningful impact in the lives of patients and their families. To get started, click on the "Donate Now" or the "Register For This Event" button on the right-hand side.
Visit PFFWalk.org to learn more about the PFF Walk. To learn more about the impact of your support, please visit pulmonaryfibrosis.org.
Thank you!
Nicole