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Unwavering support: A love letter to my husband

A close friend and I recently discussed how our rare diseases affect our spouses. I have pulmonary hypertension (PH) and she has multiple sclerosis. Our partners provide unwavering love and support as we manage our chronic conditions. Afterward, I reflected on the conversation and on my incredible husband and…

With these hospital go-bag essentials, I’m always prepared

Living with a chronic illness feels like being caught in a revolving door of doctor appointments and surprise trips to the emergency room. Trust me, I’ve been caught there more times than I can count, all thanks to pulmonary hypertension (PH). But amid the challenges, I’ve gained invaluable…

In Christmas season, my family’s togetherness is not guaranteed

Over the years, the holidays have held many different meanings for me. While I’ve felt an abundance of joy and tradition associated with these celebrations, my lifelong battle with pulmonary hypertension (PH) and other conditions has added some complicated layers to the equation. Growing up, I had many years…

Finding my strength while overcoming a medical crisis

When we face setbacks from illness, it’s easy to feel like the world is crumbling around us, as if we’ve failed and there’s no point trying anymore. But here’s the thing: We can’t let those thoughts consume us. It’s easier said than done, right? Trust me, I’ve been through…

How my healing process has helped me redefine hope

H.O.P.E.: Hold on, pain ends. This acronym came across my phone screen as I was scrolling through social media last month. Despite my physical pain and emotional discomfort, I laughed and thought to myself, “Whoever came up with this acronym has clearly never dealt with chronic pain. Pain doesn’t…


A Conversation With Rare Disease Advocates