Columns

Approval of new treatments for PH prompts hope, but also concerns

The pulmonary hypertension (PH) community is buzzing with excitement! It’s not every week that the U.S. Food and Drug Administration (FDA) approves two new treatments for a rare disease like PH. This monumental achievement is a testament to the dedication and passion of researchers, scientists, and the rest…

My PH diagnosis takes another trip around the sun

Eight years ago, I meant to bid winter adieu from an all-inclusive beach resort. Instead, I welcomed spring from a hospital bed. I went on a trip — that’s for sure — just not the relaxing and restorative one I had imagined. There were no drinks with little umbrellas for…

New symptoms lead to more tests and a POTS diagnosis

“Just one more” sounds like a line from a country song, doesn’t it? Flash back a few years, and you’d catch me saying that at the local karaoke bar. It was my little plea to my husband, Manny, and a promise that we could head home after just one more…

It’s only March and I’m already running out of spoons

In her classic 1990s song “Ironic,” Alanis Morissette sings about spoons. Describing life’s little ironies, the Canadian singer proclaims, “It’s like 10,000 spoons when all you need is a knife.” Hey, if Morissette doesn’t need any of those spoons, I’d be more than happy to take a few…

My anxiety about the future manifests in curious ways

A few years ago, I shared an image on social media of my growing library. I love thrifting books just as much as I love reading them. It’s been a joy to invest in my collection of secondhand books in adulthood. A friend and fellow chronic illness warrior commented…

PH is rare; access to pulmonary rehab shouldn’t be

Do you know about pulmonary rehabilitation? Maybe you’ve participated in a few sessions or you have a loved one who did. I didn’t know about these programs until after I was diagnosed with pulmonary hypertension (PH). I also didn’t fully appreciate the hurdles that prevent some people…


A Conversation With Rare Disease Advocates