It’s no secret that life turned upside down for my family and me when I was diagnosed with pulmonary hypertension (PH) in 2005. But my life was far from over; I still craved so much. My chronic illness may prevent me from achieving goals I once had, but I can…

Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

When I walk my dog around my new neighborhood carrying my oxygen, my neighbors seem to look at me like I’m an alien. Many stare and gawk, as if they’re speculating about what my invisible illness might be, since I otherwise appear to be a healthy…

Let’s celebrate! Come on, y’all, join me. Now, are you curious what we’re celebrating? This week, I celebrate two years of writing my column, “Worth the PHight.” I’ve mentioned before that I started this column to offer hope to the pulmonary hypertension (PH) community. This is still true. And…

The last five months have been bumpy for my family. Back in November, my husband, Manny, and I both got COVID-19. I was hospitalized for several weeks and not expected to come home. My recovery continues, but I am grateful for…

Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The activities are focused on heightening awareness about rare diseases and the hundreds of millions of individuals they are thought to affect. Patients, caregivers, and advocates worldwide will sport denim ribbons and…