From Fear to Fighter - a Column by Brandi Lewis

5 ways I protect my mental health while living with PNH

When I heard the words “you’ve been diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria” (PNH), my body quickly began working. My mind, however, stayed in a state of confusion. The sudden, unwanted change in my life affected my mental health. My mind couldn’t keep up with…

How taking on roller coasters helped in facing my fears

It’s so easy to sit scared and frustrated when diagnosed with illnesses like mine, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). Together they brought back and heightened my sense of fear. As brave as I seemed on the outside, inside I was dealing with anxiety and learning…

Why PNH advocacy is important

One night as I was lying in a hospital bed, across the hall was another patient whose young son was running through the hallways. For some reason, the doors to both of our rooms were propped open, and I could hear the patient and her husband whispering. They were trying…

Weighing the pros and cons of aplastic anemia and PNH treatment

Note: This column describes the author’s own experiences with anti-thymocyte globulin and Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. When you were diagnosed with a chronic illness, what questions ran through your mind? Did you begin to picture…

Why I didn’t research PNH online after my diagnosis

Being diagnosed with an illness can result in a plethora of emotions. We may feel vulnerable, hurt, confused, sad, raw, or scared. With tensions high, it can be hard to protect our mental health while gathering information about the disease. After I was diagnosed with aplastic anemia and…

Why I admire my now beautifully flawed body

The other day, as I was standing in front of my bathroom mirror, I began to pay attention to my scars. They’ve been on my body for so long that they’ve become a part of me. Many days, as I get ready, I don’t even notice my scars as something…