Columns

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…

I never knew what being a caregiver meant until I unexpectedly had to have them in my own life. To use a metaphor of a video game to describe it, imagine that you are playing the game of life as a patient. You reach another level of the game…

Before I was diagnosed with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), I took having energy 100% for granted. Since I didn’t have fatigue, I could go about my day doing anything, even exercise (although it wasn’t my favorite activity), without any problems. I liked that I…

When I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), one of my main questions was, how do we cure my blood disorders? In the beginning, I thought I could snap my fingers and the problems would go away. I’d be able to return to…