From Fear to Fighter - a Column by Brandi Lewis

Often when rare disease awareness weeks or months come around each year, people ask, “What can I do?” or “How can I help make a difference?” Now is a good time to answer these questions because Sept. 16-22 is Paroxysmal Nocturnal Hemoglobinuria (PNH) Awareness Week. Because I have…

I felt like my life was in shambles after I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). In the blink of an eye, I went from living on my own and working a normal 9-to-5 schedule to living at home with my parents and…

Have you heard the term “invisible illness”? The Invisible Disabilities Association defines it as “a physical, mental, or neurological condition that is not visible from the outside, yet can limit or challenge a person’s movements, senses, or activities.” That includes chronic conditions such as aplastic anemia and…

When I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I was so focused on managing my blood disorders that I neglected to work out. One day, I went to see my PNH specialist. As I updated him on my health since my last…

For me, battling aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) hasn’t always been smooth sailing. I know I’m not starting this column on a positive note, but it’s better to be straightforward than to sugarcoat things. In the past, it’s been hard to process the mental struggles…

When I was diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I thought that if I could find one great doctor who knew how to tackle my blood disorders, I’d be on the road to recovery. In fact, I was confident that I needed only one…

After being diagnosed with two rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I felt alone and often asked, “Why me?” I didn’t understand why I’d been chosen to take on this tough health battle. The loneliness was intense and at times hard to bear. I…

Battling aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH) can be stressful. As the World Health Organization notes, “the way we respond to stress, however, makes a big difference to our overall well-being.” For me, stress is a huge trigger of PNH symptoms, such as fatigue, brain…

After being diagnosed with paroxysmal nocturnal hemoglobinuria and aplastic anemia, I’ve learned to listen to my body and identify specific symptoms when they occur. I experience an array of them, including nosebleeds, fatigue, blood in the urine, and headaches. By recognizing them, I can determine which ones target…

Last Saturday, I went to the movie theater to watch “A Quiet Place: Day One.” This film is a prequel to “A Quiet Place” and “A Quiet Place: Part 2.” As the movie began, I was introduced to the main character, Samira (“Sam”), played by Lupita Nyong’o. Then, I…