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The unique challenges faced by young adults with chronic illness

“What is it like to be diagnosed with life-threatening blood disorders as a young adult?” When someone asks me this question, my body language answers as I sigh deeply, tense my shoulders, pop my fingers, and fidget anxiously. It’s a loaded question with many answers. Being a young adult…

3 reasons I’ve become less sensitive to medical anxiety

For much of my life, I had a bad case of “white coat syndrome,” which, according to the Cleveland Clinic, is when your blood pressure rises because of “the anxiety of being around doctors in white coats.” I was terrified of going to any type of doctor because anything…

Becoming a parent while living with PNH, Part 4

Last in a series. Read parts one, two, and three. The months following the delivery of my daughter, Joelle, were some of the most wonderful months of my life. But they were some of the hardest, too, especially when the symptoms of my paroxysmal nocturnal…

How my turbulent health journey helped me cultivate resilience

The other day, I was telling my story of being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia to a woman over Zoom. Halfway through, she said, “Wow, you are so resilient.” After that, my mind began to wander. Many people have used this word to compliment…

What my pregnancy journey looked like with PNH, Part 2

Second in a series. Read part one. Being pregnant was one of the most beautiful experiences of my life. The uncertainty of my health due to paroxysmal nocturnal hemoglobinuria (PNH) made the journey even more empowering. Surprisingly, I didn’t feel much different while pregnant. I’d worried that my…

How my husband and I prepared for my pregnancy with PNH, Part 1

First in a series. Receiving a diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) in 2019 left me confused, scared, and desperate for more information. As my mom checked me out at the medical office counter, I did a quick Google search and scanned the first article I found. Reading it…