Do you know what shared decision-making means in terms of health? It’s not a widely discussed term, but it’s important to understand. With my diagnoses of aplastic anemia and paroxysmal nocturnal hemoglobinuria, learning about this concept helped me feel I was part of my care team. According to…
As we start a new year, I strive to be consistent and set myself up for success. I consider what I could accomplish and which actions I’ll need to take to achieve my goals. But as someone with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I know I’ll…
I recently wrote a column titled “How I’m reflecting on 2024 while preparing for the new year.” In it, I shared that I want to work out more consistently in 2025, exercising three or four days a week. That made me think about my answer to the question, “How…
In December, I always reflect on the year that’s passed and find myself saying “I can’t believe I made it to the end of the year” or “What a year it’s been.” It’s as if a light bulb is going out, and I realize the year will soon be a…
What does it mean to “live rare”? After I was diagnosed with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), it took me years to understand how to navigate tough times and adapt to life with my rare diseases. According to the National Organization…
The weather is getting cooler, leaves are changing colors, and, yes, pumpkin-flavored everything is at our fingertips. Unfortunately, with the fall comes flu season. According to the U.S. Centers for Disease Control and Prevention, flu season usually occurs in the fall and winter months, with most flu activity peaking…
When I was growing up, I always played with dolls. Some of them came as a package deal with a husband and kids. I’d name the kids and care for them as if they were my own. I also grew up with Cabbage Patch Kids and would carry them around…
In 2016, I went to the doctor for a six-month checkup. To my surprise, I discovered that I was no longer in remission for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), two bleeding disorders. This prompted many emotions, particularly because I knew what to expect afterward. Once again,…
Often when rare disease awareness weeks or months come around each year, people ask, “What can I do?” or “How can I help make a difference?” Now is a good time to answer these questions because Sept. 16-22 is Paroxysmal Nocturnal Hemoglobinuria (PNH) Awareness Week. Because I have…
I felt like my life was in shambles after I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the blink of an eye, I went from living on my own and working a normal 9-to-5 schedule to living at home with my parents and…
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