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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…

Third in a series. Read parts one and two. On May 8, 2022 — Mother’s Day — I arrived at the hospital for labor induction. At that point, my platelet count was declining rapidly due to my paroxysmal nocturnal hemoglobinuria (PNH), almost to a point where I…

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…

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…

When I was diagnosed with paroxysmal nocturnal hemoglobinuria and aplastic anemia, my life became a disorganized mess. I received no warnings before the chaos ensued. It felt like I was trying to reach out and grab an issue so I could bring it close to me and resolve it.

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…

Truth moment: I’m stubborn. I’d rather figure out problems by myself than ask for help. But when I was faced with two chronic illnesses, paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, I had to learn the importance of letting others help me. Once I was diagnosed, caregivers…

In everyday conversations with family and friends, I’ll sometimes hear someone comment that a person they know has either strep throat or the flu. This immediately puts me in a defensive mode. My brain is flooded with questions aimed at protecting my safety: Who is sick? Have you been around…

I’ll never forget the confusion and fear that began to take over my body when I heard the words “You’ve been diagnosed with PNH,” or paroxysmal nocturnal hemoglobinuria. It was 2016, and not only was I told I’d have to battle this illness, but I’d also been diagnosed…

My social life has suffered as I’ve lived with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH). Many times my symptoms have held me back, keeping me from making plans because my health is so unpredictable. It’s frustrating. I hate coming across as a flaky friend who backs out…