Columns

Should you share your story of life with chronic illness?

Have you ever wondered why some people openly share their health struggles while others keep them to themselves? Before jumping to conclusions and assuming it’s all about seeking attention, let’s take a moment to reflect. Speaking up about my chronic illness journey with pulmonary hypertension (PH) has given…

A reliable healthcare team helps me manage my PH and CKD

It’s 7 p.m. on a Thursday, and my husband, Manny, and I are cooking dinner. Suddenly, my phone rings. Manny looks concerned and says, “It’s the nephrologist.” I already have a gut feeling it won’t be good news. My bloodwork has been all over the place the past few…

Join me this August in advocating for those who have PH

I’ve said it before, and I’ll say it again (and again): Elected leaders in the United States need to hear from their constituents, which include many of us in the pulmonary hypertension (PH) community. The doldrums of August is the perfect time to connect with your members…

Has my PH diagnosis made me a better or worse friend?

Over the past few months, I’ve asked myself several times if I’ve become a better or worse friend, but I didn’t know the answer. When pulmonary hypertension (PH) makes me feel my worst, I worry I’m a bad friend. I can’t spend as much time with people as I’d…

Let’s talk about and normalize sleep apnea

I can see the marks on my face most mornings when I look in the mirror. In my mind, the reddish lines and indentations look like well-worn train tracks. Lately, two small circular markings have made themselves known on each side of my nostrils. Those marks are from the straps…


A Conversation With Rare Disease Advocates