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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…

I recently accompanied my grandmother to one of her doctor appointments because she’d expressed feeling nervous and having boundaries when it came to her health. I asked the doctor questions, relayed his message in simpler terms to my grandma, and spoke up as her advocate. The doctor was impressed by…

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…

The first time I experienced vasovagal syncope, a sudden drop in blood pressure, and passed out from a blood draw was before my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH). I remember being so nervous beforehand that my heart was racing. The second the needle went through my skin,…

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…

When I started taking Soliris (eculizumab) after being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I was told there was a risk I could contract meningitis, which scared me. I began to make sure I carried my preventive antibiotics with me, and that I had a thermometer…

Because of paroxysmal nocturnal hemoglobinuria (PNH), I often have a troubling cognitive symptom called brain fog. It has gotten worse since I recently changed my medication. Among the most prominent features of my brain fog are stuttering and forgetting or combining words. Recently, for example, I was…

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…

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), the mental weight I carried to process, accept, and move forward with this new life was heavy. I had trouble wrapping my head around it to understand what had happened. At the time, I was fresh out of multiple…

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…