Becoming a parent has taken me through a range of emotions, prompting new fears, thoughts, and views of my life — including about how my disease will affect my family. When I became pregnant in 2021, I started to picture several scenarios relating to my future child (or children) and…
One of my favorite podcasts, “Positivity Unleashed,” had an episode about self-love that surprised me. I immediately drew a connection to my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), and how it affects my mindset each day. After listening to the episode, I decided to dive in…
“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…
One experience that brings me the most joy is going to amusement parks. I love the atmosphere, including the smell of funnel cake, the screams from people on rides, the music, and the scenery. I’ve gone to most of the parks on the East Coast and love them all! But…
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…
Recently, I heard someone say they were facing a “new normal” with paroxysmal nocturnal hemoglobinuria (PNH). It made me think about the many ways PNH has affected me, including forcing me to adjust to a new way of life. I am guilty of sometimes thinking that my life will…
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…
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