Columns

In 2016, I went to the doctor for a six-month checkup. To my surprise, I discovered that I was no longer in remission for aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), two bleeding disorders. This prompted many emotions, particularly because I knew what to expect afterward. Once again,…

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…

Sometimes I daydream about what my world would look like if there were a cure for paroxysmal nocturnal hemoglobinuria (PNH) other than a bone marrow transplant, which is a high-risk procedure. According to PNH News, treatments available for PNH mainly aim to reduce the destruction of…

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…

No one thinks they’ll hear the words “you have paroxysmal nocturnal hemoglobinuria (PNH)” — until they do. No one is prepared to navigate a PNH diagnosis — until they must. The beginning of this journey can feel like climbing a ladder in a pitch-dark room, your arms outstretched…