Columns

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…

News flash: Not every doctor knows what a PNH diagnosis means

My view of doctors and their expertise has greatly shifted through my years of living with a rare disease. At one time I held the weight of their knowledge, degrees, and experience to be the end-all-be-all because they were professionals when it came to anything related to medicine. I wouldn’t…

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…

Spoiler alert: That PNH diagnosis wasn’t a dream

Going to the doctor for a wellness check or discussions about my health was unheard of during the first 24 years of my life. My needle phobia played mind games on me, tricking me into believing that the only reason for invasive blood draws, vaccines, and IVs was to cause…

How I navigate a career while managing PNH symptoms

Working as a healthy person is hard, but add a chronic illness to your 9-to-5 job, and it becomes even tougher. I have worked in corporate America for seven years. Throughout my career, I’ve endured stressful days when the company was short-staffed and I was the only person on the…

My journey from fearing PNH to learning how to fight it

“Why me?” This is the question many patients ask themselves after being diagnosed with an illness. My first “why me?” moment occurred in 2009 at age 19. Between living in sorority dorms, studying in the library, and eating and socializing in the café, college life filled my days. I had…