Columns

Looking back on how my health journey affected my siblings

When you’re diagnosed with a chronic illness, no one tells you how it will affect other members of the family, particularly siblings. I grew up in a close-knit family, and my mom and dad raised three strong, morally driven women who are resilient enough to face life’s challenges. But that…

To travel with a chronic illness, pack caution and carry courage

Travel has always fed my soul. There’s something magical about exploring a new city, tasting different foods, or just watching the sunrise from someplace unfamiliar. But since I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, traveling has taken on a whole new meaning — it’s no longer…

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…