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…
One of my favorite hobbies is watching competitive reality television shows. “Survivor” and “The Amazing Race,” both on CBS, are two of my guilty pleasures to pass the time. I’ve been a fan of them for many years and dreamed of one day being a contestant. However, after…
Have you ever listened to a song and connected with the lyrics instantly? When you want to keep the song on repeat, or Google the words and sit staring into space while interpreting them? Listening to music has always been my favorite way to escape reality; in fact, certain songs…
Before I departed on a recent flight to New York City, I found myself watching a woman in a wheelchair as she was moved to the front of the line to board first. “Man,” I thought, “I’d love to be the first to do that and get to my seat.”…
We’re now well into the holiday season of celebrating, sharing family time, and offering gifts! As a person with paroxysmal nocturnal hemoglobinuria (PNH), I’m excited to put forth the following three items for your seasonal giving. I have two already and plan to ask for the third this year.
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…
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