Columns

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…

How hospital staff, other patients supported me after my diagnosis

Recently, I participated in a paroxysmal nocturnal hemoglobinuria (PNH) panel discussion where patients shared stories about living with the blood disorder. Many mentioned that support from hospital staff helped them build a community they didn’t know they needed. After being diagnosed with aplastic anemia and PNH, I…

The challenges involved in living with invisible illnesses

When people picture someone with an illness or disability, they often visualize a wheelchair, medical device, or some other visible sign that the person is facing health challenges. But there’s not always an external indicator that someone is living with an illness. As a Talkspace article explains, “An invisible…