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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…

The other day, as I was standing in front of my bathroom mirror, I began to pay attention to my scars. They’ve been on my body for so long that they’ve become a part of me. Many days, as I get ready, I don’t even notice my scars as something…

I’m from Long Island, New York, where couples choose either an over-the-top wedding or a down payment for a house; we chose a wedding. As in the movie “My Big Fat Greek Wedding,” my husband, John, and I had a day that required immense planning, many moving parts,…

I answered the doctor’s call with, “Hello, this is Brandi.” On the other end, my doctor paused and then delivered the news: “Your results came back, and they are positive for paroxysmal nocturnal hemoglobinuria” (PNH). I didn’t know what to think. Just that week, I’d been diagnosed…