Columns

Finding community among those with heart illnesses

Most of my memories with pulmonary hypertension (PH) can be summarized with three words: shortness of breath. I was always trying to catch my breath anywhere I went. But over time, as predicted, the shortness of breath began to cause other issues. As my pulmonary pressures worsened, my…

We need better access to healthcare in the US

Over the past 19 years, amid the challenges of managing a rare disease called pulmonary hypertension (PH), I’ve had countless encounters with doctors. As I’ve navigated the intricate landscape of chronic kidney disease, anemia, and various other health conditions, keeping track of all the specialists I consult…

Unwavering support: A love letter to my husband

A close friend and I recently discussed how our rare diseases affect our spouses. I have pulmonary hypertension (PH) and she has multiple sclerosis. Our partners provide unwavering love and support as we manage our chronic conditions. Afterward, I reflected on the conversation and on my incredible husband and…

With these hospital go-bag essentials, I’m always prepared

Living with a chronic illness feels like being caught in a revolving door of doctor appointments and surprise trips to the emergency room. Trust me, I’ve been caught there more times than I can count, all thanks to pulmonary hypertension (PH). But amid the challenges, I’ve gained invaluable…


A Conversation With Rare Disease Advocates