For me, battling aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) hasn’t always been smooth sailing. I know I’m not starting this column on a positive note, but it’s better to be straightforward than to sugarcoat things. In the past, it’s been hard to process the mental struggles…
When I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I thought that if I could find one great doctor who knew how to tackle my blood disorders, I’d be on the road to recovery. In fact, I was confident that I needed only one…
After being diagnosed with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I felt alone and often asked, “Why me?” I didn’t understand why I’d been chosen to take on this tough health battle. The loneliness was intense and at times hard to bear. I…
Battling aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) can be stressful. As the World Health Organization notes, “the way we respond to stress, however, makes a big difference to our overall well-being.” For me, stress is a huge trigger of PNH symptoms, such as fatigue, brain…
After being diagnosed with paroxysmal nocturnal hemoglobinuria and aplastic anemia, I’ve learned to listen to my body and identify specific symptoms when they occur. I experience an array of them, including nosebleeds, fatigue, blood in the urine, and headaches. By recognizing them, I can determine which ones target…
Last Saturday, I went to the movie theater to watch “A Quiet Place: Day One.” This film is a prequel to “A Quiet Place” and “A Quiet Place: Part 2.” As the movie began, I was introduced to the main character, Samira (“Sam”), played by Lupita Nyong’o. Then, I…
Recently, I was asked to provide advice to a fellow patient on how I handled coming out of remission from aplastic anemia and, at the same time, being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). Remission refers to the absence of symptoms or disease activity. In…
Last weekend, I attended a first birthday party for my friend’s son. During the week leading up to the party, I wasn’t feeling my best, as I was struggling with severe fatigue and headaches. I could hear my body telling me to rest and take it easy. My invisible…
Have you ever paused during an appointment because your doctor used a term you didn’t understand? When it happened to me, it was like time had stopped. I was no longer listening to my doctor; instead, my mind filled with questions as I tried to figure out what the term…
Does the battle with paroxysmal nocturnal hemoglobinuria (PNH) get any easier? This is a question I asked myself at the start of my journey. The finality of the words “you have been diagnosed with PNH” made me feel like everything I’d ever known or desired was ending or…
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