Fatiguing but Succeeding - Erin Fortin

Fear is something I surprisingly don’t experience much when it comes to living with paroxysmal nocturnal hemoglobinuria (PNH). After I’ve been through multiple battles and come out with victories on the other side, the fear of medical unknowns diminishes. Some of my battles have included a blood transfusion, a…

What do you think of when you hear the words “one in a million”? Do you think of the chances of winning the lottery and how those odds seem almost impossible, making you sigh with disappointment and think winning could never happen for you? Yet do you still buy a…

Note: This column describes the author’s own experiences with Ultomiris (ravulizumab-cwvz). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. Excited, relieved, and hopeful: These were emotions I felt when I switched my paroxysmal nocturnal hemoglobinuria (PNH) medication a few…

When I drive, the car is like a sold-out concert at Madison Square Garden in New York City. I love singing with a deep-rooted passion along with songs that either have meaningful lyrics or just a sound that somehow resonates with me. I have a wide range of musical tastes…

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…

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…

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…

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…

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…