Columns

How the power of choice helped me fight my chronic illnesses

Life presents us with battles and trials we wouldn’t wish to face. Yet how do we choose to show up in the face of the unexpected? My journey through chronic illnesses, including paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, has offered countless life lessons. I’ve had enlightening moments…

The power of shared decision-making in patient care

Paroxysmal nocturnal hemoglobinuria (PNH) is more than just a tongue twister; it’s a rare, chronic blood disorder that alters every aspect of life. When I was diagnosed with it in 2017, I quickly realized I wouldn’t just be on a physical journey, but also an emotional and informational…

A letter to those new to a PNH diagnosis, from someone who gets it

I get it. That’s the first thing I want any patient reading this column to know. I understand what you’re going through; you are not alone. After my diagnoses with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I experienced many emotions, including loneliness. Hearing that my blood…

5 things I wish I knew after my PNH diagnosis

You never think you’ll face health issues until you do. I wasn’t at all prepared for my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, and the news filled me with worry. I was thrust into a world of unknowns and forced to learn about two rare…

Feeding my fight: How I eat to live well with PNH

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, food was the last thing on my mind. I was overwhelmed by appointments, blood work, and adjusting to my “new normal.” But over time, I realized that what I put into my body played a huge role in…

How I support other PNH and aplastic anemia patients

Living with rare blood disorders can bring a sense of loneliness. Of the billions of people on Earth, only a handful truly understand what I’m going through. In addition, trying to find a good support team and helpful health information can be daunting and stressful. With my diagnoses of…

When the storm clears: A day in my life without PNH symptoms

Some days I wake up and forget for a few golden seconds that I have paroxysmal nocturnal hemoglobinuria (PNH). My eyes flutter open, and there’s no tightness in my chest, no pounding in my head, no crushing fatigue pulling me back into the mattress. There’s just morning light, the…

How I navigate the symptoms of PNH and aplastic anemia

In past columns, I’ve stated that I live with both aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). Today I want to explain how I navigate these two rare blood disorders simultaneously. In 2009, I was diagnosed with aplastic anemia, a condition in which the bone marrow doesn’t produce…

What does PNH brain fog feel like?

Living with paroxysmal nocturnal hemoglobinuria (PNH) for nearly eight years has shaped how I show up in every part of my life. It’s a quiet battle, mostly invisible to the outside world, but inside, it’s a constant balancing act. One of the most difficult and misunderstood symptoms I…