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An IPF Patient Perspective on What It Means to Be Rare

For most of my adult life I was blissfully unaware of rare diseases. This lasted until 2016, when I was diagnosed with idiopathic pulmonary fibrosis (IPF), a life-threatening and progressive lung disease that affects about 200,000 Americans, with 50,000 new cases diagnosed annually in the U.S. Like many others,…

Ensuring No One Is Underserved Along Roads Less Traveled

The availability and quality of healthcare patients receive is often based on where they live and what they can afford. This is especially true for those among us with a rare disease. That’s what health equity is all about. It belongs under the umbrella term “social justice,” which encompasses a…

Celebrating Our Caregivers

During the course of having idiopathic pulmonary fibrosis (IPF) or any other rare disease, the role of the caregiver requires a large measure of patience, an ability to multitask, and the capability to pivot without knowing what lies ahead. Caregivers, whether working alone or as part of a team,…

Returning to Work After My Diagnosis

Teaching has been a passion of mine since I earned my masters degree in sociology from the University of Houston-Clear Lake (UHCL) in 2013. Becoming a college professor gave me a sense of self-worth. I was proud of my accomplishments, especially since I obtained my degree so late in…

I Often Find Myself Downplaying My Invisible Illness

One of the unique challenges of living with an invisible illness is figuring out how to tell others. Although I’ve lived with idiopathic pulmonary fibrosis (IPF) for five years, it’s still not easy for me to disclose my condition. Most people wouldn’t know that this life-threatening and relentless disease has…