Columns

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…

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, I was overwhelmed by all the information that was thrown at me. I had to process multiple questions: What exactly is PNH? How do I explain it to others? What does this mean for my…

I recall hearing people being asked the question “How did you become successful?” Many of the answers were a version of “Work hard now and sleep later.” I used to live by that code. I thought that to be successful, I had to put my health last. I needed to…

A common phrase I keep seeing when it comes to living with a rare disease is “don’t let the disease define you.” But what if I did let my paroxysmal nocturnal hemoglobinuria (PNH) diagnosis define me? After all, I’m stronger, kinder, more flexible, and a lot tougher after living…

Being diagnosed with an illness can result in a plethora of emotions. We may feel vulnerable, hurt, confused, sad, raw, or scared. With tensions high, it can be hard to protect our mental health while gathering information about the disease. After I was diagnosed with aplastic anemia and…

My view of doctors and their expertise has greatly shifted through my years of living with a rare disease. At one time I held the weight of their knowledge, degrees, and experience to be the end-all-be-all because they were professionals when it came to anything related to medicine. I wouldn’t…