Columns

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…

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…

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…

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…

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…