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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…

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…