Columns

Throughout my past few years of living with paroxysmal nocturnal hemoglobinuria (PNH), I’ve appreciated having a solid relationship with my hematologist. I’m grateful that my appointments are open conversations rather than one-sided lectures of him explaining my disease to me. He values my input and allows me to be…

My husband, John “JB” Fortin, drives the #34 Modified for the NASCAR Whelen Modified Tour, the sport’s oldest division. I’m so grateful that he and his crew use their platform to bring more awareness to my disease, paroxysmal nocturnal hemoglobinuria (PNH). During one of his…

It’s so easy to sit scared and frustrated when diagnosed with illnesses like mine, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). Together they brought back and heightened my sense of fear. As brave as I seemed on the outside, inside I was dealing with anxiety and learning…

From the moment I was diagnosed with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), I felt like I was constantly searching for the answer to the question “Why me?” My mind would drift in different directions, and it wasn’t until recently that I finally found an answer. The…

One night as I was lying in a hospital bed, across the hall was another patient whose young son was running through the hallways. For some reason, the doors to both of our rooms were propped open, and I could hear the patient and her husband whispering. They were trying…

When I do a Google search of my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), the first question that pops up is, “Can you live a normal life with PNH?” When I was diagnosed in 2019, I had the same question, fearfully wondering if a normal life would be…

As fatigue took hold of my body, I’d lie in bed and think how lazy I was for not getting up to start the day. Early in my health battle, I had trouble being OK about not being OK. I thought that to become well faster, I had to get…

Being diagnosed at age 24 with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, hit me out of nowhere. I was young and naive, and never anticipated that something so serious could happen to me at that age. The day I was diagnosed, I went numb after the…

Note: This column describes the author’s own experiences with anti-thymocyte globulin and Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When you were diagnosed with a chronic illness, what questions ran through your mind? Did you begin to picture…

A saying I wish would become more common is “not all disabilities are visible.” That’s the case for me and my invisible disease. Although I understand how people can’t always relate to or remember my limits unless they’ve lived them or see them, my insight into others doesn’t make it…