Columns

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I was intimidated by the idea of being treated with an intravenous medication and having to strictly follow an infusion schedule. I feared the unknown and wasn’t sure what to expect. Over time, though, I grew more comfortable…

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…

As a patient with paroxysmal nocturnal hemoglobinuria (PNH), I experience a variety of symptoms every day. In a previous column, I discussed my most common symptoms, such as fatigue, headaches, and shortness of breath, but the list is much bigger. Sometimes it’s hard for me to figure…

The first months of the year are typically filled with New Year’s resolutions, early winter sunsets — and the sounds of coughing, sneezing, and nasal congestion. Every year, it seems like I or someone around me gets sick. Protecting ourselves in public isn’t easy, but we can take precautions like…

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…

One of my favorite reality TV shows, “Selling Sunset” on Netflix, is about a real estate firm that sells luxury homes for millions of dollars. The agents celebrate each sale by ringing a huge bell that hangs from the ceiling and is loud enough to echo throughout the…

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…

Comforting people when they’re going through difficult times or looking for support is hard to navigate. I’ve been on both sides of this situation, especially since I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH). It’s tricky to know the right thing to say or do. I recently connected…

The new year is upon us, which means more opportunities to accomplish bigger goals in life. Making it to another year with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) reminds me of my resilience and drive to conquer what others would deem impossible. Because you’re reading this, you’ve…

The holidays are filled with joy, happiness, love, togetherness, and so many warm, fuzzy feelings. But I wasn’t feeling any of them at the beginning of my health journey and had a hard time getting into the holiday spirit. I didn’t feel happy, joyful, or full of life. Instead, I…