This Is Who I Am Beyond Pulmonary Fibrosis

An emerging healthcare priority in the past decade has been patient-centered care. It is an idea that many facilities are still trying to define. Patient-centered care is simple to me: person first, patient second. I’m grateful to my healthcare team for getting this right. Before my diagnosis with…

You may be familiar with the proverb, “It takes a village to raise a child.” The phrase is believed to have originated from the Nigerian Igbo culture and is often cited in literature and popular media, most famously in Hillary Rodham Clinton’s 1996 book, “It Takes a Village.”…

New York cardiopulmonary physical therapist Noah Greenspan has launched the Pulmonary Wellness Foundation (PWF), a nonprofit group that provides free online information on a range of prevalent, rare and ultra-rare pulmonary diseases for those who can’t afford to pay for it. PWF specifically targets patients with pulmonary fibrosis,…

I was recently brainstorming ideas with other rare disease columnists about how to support someone admitted for a long hospital stay. I started thinking about the ways that caregivers need support, too. It’s easier to be the person who can walk out of the hospital, but caregivers still deal…

You would be hard-pressed to find anyone who hates pulmonary fibrosis (PF) more than the patients living with it and their caregivers. This chronic and debilitating disease, characterized by progressive scarring in the lungs, is cruel and relentless. PF affects much more than the ability to breathe — it also…