In the thick of my aplastic anemia and paroxysmal nocturnal hemoglobinuria, my family and I boarded a plane to take a vacation. I hadn’t been on a flight in a while, other than to see my specialist in New York. We’d planned this trip to give me some…
Your story is your superpower! I’ve heard this statement so many times, but didn’t fully understand it until I began sharing my own story. Since 2008, I’ve battled two blood disorders: aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the beginning, I was focused only on my health so…
After I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I was told to consider a bone marrow transplant. My doctor quickly pointed out, however, that there weren’t many minority donors available. According to the National Marrow Donor Program’s Be The Match registry, you’re…
I’ve been thinking a lot lately about what I’ve learned about my mental health while on this journey with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia. I was prompted to ponder this topic after reading several articles about World Mental Health Day on Oct. 10, which seeks…
Last week, I sat on my couch, curled up with a blanket, and turned on the movie “Sitting in Bars With Cake.” I watched the trailer before hitting “play,” understanding that an important piece of the story involved a young woman who received a life-altering medical diagnosis. To…
“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…
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…
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…
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.
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…
Get regular updates delivered to your inbox.