On Some Days, I Feel Invincible

On Some Days, I Feel Invincible

At my last doctor’s appointment, my physician asked me how I felt. I replied, “Some days, I feel invincible.” She gave me the biggest smile and told me how happy she was that I was doing so well. While I get colds and sometimes contract a virus, when I…

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…

It Takes a Village to Survive Pulmonary Fibrosis

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 Pulmonary Wellness Foundation Offers Free Online Rehab Programs

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,…

Caregivers Need Care, Too

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…