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When my son Cullen, 22, was diagnosed with severe pulmonary hypertension (PH) in 2008, he didn’t look sick. People couldn’t see the severely enlarged, overworked heart and sickly lungs struggling to breathe. “He looks so healthy,” we were often told. There is no cure for PH, but…

I hate communicating with automated phone systems. I hate that advancing to the next stage of the process to get what I need depends on how the automated program understands the sound of my voice and the cadence of my words. I hate the way I feel when the stutter…

Illness is a beacon — it draws eyes, attention, and intervention. Doctors. Caregivers. Interns invited into the room to observe a rare illness they might not see again in their career. All of them turned their eyes to me when I was young, and they have yet to look away.

It’s easy to compare friendship to a favorite painting or song when making a personal connection through experience, emotion, fear, or hope. But allow me to take the comparison a bit deeper. You don’t need to meet an artist to feel moved by their painting or lyrics to a song,…

“No! She can’t take off her backpack! She has to wear it or she could die!” The emotional exclamation echoed throughout our elementary school gymnasium. The protest came from a classmate of mine. We had known each other through all of grade school, and he had grown very protective of…

Before I could process the sharp sound, people were already sprinting onto the field. I watched in disbelief as spectators jumped over the railings while players scrambled to bring fans off the field into the safety of the dugout. As the chaos unfolded and more people reacted with fear at…

My family has grieved the passing of many people over the years. Some died peacefully from natural causes, too many were taken by pulmonary hypertension (PH) and other diseases, and a few left this world both suddenly and tragically. Ages have ranged from the very young to the very…

As I debated what to write this week, I struggled for days. Continuous brain fog makes the decision difficult more often than not. My brain fog presents as lapses in memory, in which I forget what I was saying or other simple tasks. The icing on the cake is…

When the technician leaves the room following my echocardiogram to ensure that all of the proper images have been collected, my mom and I pick up the game quickly. Looking at the mural that spans the wall across from us, we each count the number of cars, people in…

As we trade swimsuits for sweaters in preparation for the fall season, many of us look forward to the premiere of new television shows and the return of our old favorites. Growing up, I would devour entertainment magazines dedicated to previewing the fall television and film lineups like popcorn. I…

In 2008, my then 8-year-old son, Cullen, was diagnosed with pulmonary arterial hypertension (PAH) following a right heart catheterization procedure. I spent much of that night researching, taking notes, and writing questions and concerns about this rare and incurable disease, which I’d never heard of until that day. The…

When I describe my pulmonary hypertension (PH) as stable, many think it means that I’m in remission. They don’t comprehend that, while my numbers may be stable, I still have PH. I continue to experience symptoms, require oxygen, and PHight daily. Those of us with rare, chronic illnesses celebrate when…