From Fear to Fighter - a Column by Brandi Lewis

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…

When I was growing up, self-love wasn’t something I thought about too much. I had bought into the idea that to be happy, I had to make a lot of money and work until I couldn’t anymore. But when I was 19, I had to start fighting two rare blood…

Merriam-Webster defines hope as the “expectation of fulfillment or success.” To me, hope is the feeling of wishing for a positive outcome. It prompts thoughts about an altered reality full of positivity and an ease of flow. This four-letter word is simple in name but powerful in the meaning…

Growing up, I’d always heard the quote, “There’s nothing like the bond between a dog and its owner.” I didn’t entirely understand this statement until the day my dad showed up with a dog in his arms while standing on the porch. The dog, Booser, was a cuddly…

I spent countless days at the hospital after being diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), and during that time, my family and I formed a beautiful bond with my social worker. She was always so kind and passionate, and took action to help me…

December gifted the paroxysmal nocturnal hemoglobinuria (PNH) community a big win. Fabhalta (iptacopam), developed by Novartis, became the first oral therapy approved by the U.S. Food and Drug Administration (FDA) to treat PNH. The news prompted a surge of feelings in me, given my years of…