Columns

An Ode to a Cherished Friend

I met my friend Drea years ago. We quickly bonded over both of us being childhood cancer survivors. We were able to speak freely with each other about what that meant. How we were so grateful for this life, but how it’s still difficult sometimes. We talked…

When Others Don’t Understand How PH Impacts Our Lives

Sometimes (okay, probably more often than not) you meet people who don’t understand your illness. They take breathing for granted. They don’t even notice their lungs most of the time. They don’t understand how you struggle some days, gasping, dealing with chest pain, unable to do much. And they certainly…

Back to the Beginning of My Diagnosis: Part Two

In continuation of my previous column leading to my diagnosis, I had just been told by my physician’s nurse to research pulmonary hypertension. To this day, I still claim that looking up pulmonary hypertension online was one of the worst mistakes I’ve ever made. There was article after article saying how the…

Serotonin Receptor as a Treatment Strategy for PAH?

Whether you’re studying pulmonary arterial hypertension (PAH) or another disease, there’s always a sense of joy that comes from seeing potential new therapies finding success in the lab. As someone with a rare disease myself, I comb the literature to see what the next life-changing medication may be. While the…


A Conversation With Rare Disease Advocates