When I was first diagnosed with interstitial lung disease (ILD), it felt as though the ground shifted beneath me. Overnight, my world filled with unfamiliar medical terms, new specialists, and a level of uncertainty I wasn’t prepared for. I remember sitting in exam rooms trying to absorb information while quietly wondering where I fit in this new reality

Like so many people facing a rare lung disease, I felt overwhelmed. But over time, I learned something essential: belonging doesn’t come from a diagnosis. It comes from connection. And for me, that connection — that sense of home — is found at the Pulmonary Fibrosis Foundation (PFF).

My journey with ILD

My path to an ILD diagnosis was anything but straightforward. I spent months navigating symptoms that didn’t add up and waiting for answers that never seemed to come fast enough. Those early days were filled with fear, frustration, and uncertainty.

Appointments often ended with more questions than clarity. I felt like I was piecing together a puzzle without knowing what the final picture was supposed to look like. Eventually, I realized that while medical care is vital, it isn’t the whole story. I needed trustworthy information, encouragement, and people who understood the day‑to‑day reality of living with ILD. I wasn’t just searching for treatment anymore — I was searching for community.

Finding the Pulmonary Fibrosis Foundation

I discovered the Pulmonary Fibrosis Foundation while looking for reliable, compassionate information about ILD. What struck me immediately wasn’t just the quality of the resources — it was the heart behind them.

This wasn’t simply an organization. It was a lifeline.

From the first webinar I attended to the first patient story I read, something shifted inside me. For the first time since my diagnosis, I felt seen and understood. The PFF wasn’t just sharing information. It was offering connection, hope, and a place to land.

What the PFF Means to Me

Community: Through PFF support groups and events, I’ve met people who truly understand the daily realities of ILD. Their encouragement has carried me through difficult seasons.

Education & Empowerment: The PFF provides clear, practical information that empowers those living with pulmonary fibrosis (PF) and ILD as well as their families. Their resources have helped me walk into appointments with confidence and courage to advocate for myself.

Hope: Most importantly, the PFF reminds me that ILD is part of my life, but not the whole of my life.

Getting Involved and Giving Back

In 2025, I stepped into the role of PFF Ambassador — a spokesperson for the ILD community. Through formal training, I learned how to advocate and represent our community with clarity and compassion. My mission is simple: to offer hope and show others living with ILD that a meaningful, fulfilling life is still possible.

The PFF introduced me to resources that helped me adjust, adapt, and become empowered:

• PFF Care Center Network: 88 specialized ILD centers across the U.S. offering expert care and coordinated support.
• PFF Education Resources, including the PF Basics Program: A foundational course that helps patients understand their disease ad treatment options.
• PFF Support Groups: Online and in-person communities where people share experiences, encouragement, and up-to-date information.

A Message for Others Living with ILD

If you are newly diagnosed — or still searching for answers — hear this clearly: you are not alone. The Pulmonary Fibrosis Foundation is here to walk alongside you with education, support, and hope.

Living with ILD has taught me that “home” isn’t a physical place. It’s the people who surround us with understanding and compassion. At the PFF, I’ve found a home where my voice matters and my hope is renewed.

About the Pulmonary Fibrosis Foundation

At the Pulmonary Fibrosis Foundation, we are dedicated to making a difference in the lives of those affected by pulmonary fibrosis (PF), a form of interstitial lung disease (ILD). Pulmonary fibrosis is a process that causes lung scarring, in which fibrotic tissue blocks the movement of oxygen from inside the tiny air sacs in the lungs into the bloodstream. Low oxygen levels, and the stiff scar tissue itself, can cause people with pulmonary fibrosis to feel short of breath, particularly when walking and exercising. Over 250,000 Americans are living with PF today. Approximately 50,000 new cases are diagnosed each year and as many as 40,000 Americans die from idiopathic pulmonary fibrosis (IPF) each year.

As the largest organization committed to raising awareness and providing support, our mission is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, and healthcare providers.