As someone with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria, I’ve endured many difficult moments. It was challenging to obtain a correct diagnosis, access treatment, and find a doctor who specialized in my conditions. The rarity of my blood disorders was the catalyst for me to…
Living with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) has altered my day-to-day routine. My daily routine today looks much different than when I was newly diagnosed. Those days were filled with doctor appointments and unscheduled trips to the emergency room. Now that I’m in a better place than…
Blood donors are silent heroes who aren’t recognized enough. As someone who’s received many blood transfusions, I couldn’t help but wonder how we got to this point of safely sharing healthy blood in hopes of saving lives. According to the American Red Cross, the history of blood transfusions began in…
The World Health Organization (WHO) defines equity as “the absence of unfair, avoidable, or remediable differences among groups of people, whether those groups are defined socially, economically, demographically, or geographically or by other dimensions of inequality.” WHO applies that concept to health equity, noting that it “is achieved when everyone…
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…
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