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…
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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…
I’m proud to have compassion and empathy for others. Connecting with people’s experiences, especially healthcare struggles, is very fulfilling for me. I can relate, offer advice, and give words of encouragement that I know will help. Because I’ve experienced medical trauma related to my rare blood disease, paroxysmal nocturnal…
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…
Recent Posts
- Improving quality of life is key to living fully with PNH
- New PNH case report shows anemia improved after treatment change
- PNH treatment ruxoprubart shows promise in Phase 2 trial
- Real-world study: Ultomiris is preferred treatment option for PNH
- New questionnaire assessing fatigue ‘reliable and valid’ for adults with PNH