Columns

How spreading rare disease awareness leads to change

I love breakfast burritos. When I lived in California, it wasn’t uncommon for me to go on breakfast burrito runs with co-workers or while hanging out with friends over the weekend. I don’t know what it is about this magical food — maybe it’s the hot sauce — but there’s…

My self-care strategy includes ‘no medical talk’ days

Life with pulmonary hypertension (PH) is overwhelming and exhausting at times. We patients often find ourselves sitting in doctors’ offices, calling about insurance claims, and checking on medication refills. This can be difficult when conversations seem almost always centered on treatments, test results, and the latest PH research.

My Son Would Like to See Everyone Get Over His PH

As babies, our first steps were probably acknowledged with exaggerated praise. Since then, however, not every step forward has been applauded. Wouldn’t it feel awkward if they were? My son Cullen received a heart and double-lung transplant in 2014 after pulmonary hypertension (PH) caused a critical decline in…

The Art of Packing for an Unexpected Hospital Stay

Nothing makes me crankier than walking into the ER any time after 9 p.m. Lying on a stretcher that feels more like cardboard than a mattress, with fluorescent lights burning a headache into my temples, will have me missing my bed at home in an instant. It’s an experience I’ve…

Raising Awareness About the Benefits of Clinical Trials

Life with pulmonary hypertension (PH), a rare disease with no cure, is challenging. The helplessness is compounded by the fact that a solution may exist, but it’s currently out of reach. To get through these emotions, we who have PH rely on faith and hope to motivate…

Eating Dark Chocolate While Searching for Good PH Memories

I love dark chocolate: the complexity of the rich flavor, the bittersweet notes of cacao. Some say that dark chocolate is an acquired taste, not for everyone. As I write this column, I’m indulging in a square of hazelnut and coffee-flavored dark chocolate and thinking about memories. The chocolate was…


A Conversation With Rare Disease Advocates