Recently, I participated in a paroxysmal nocturnal hemoglobinuria (PNH) panel discussion where patients shared stories about living with the blood disorder. Many mentioned that support from hospital staff helped them build a community they didn’t know they needed. After being diagnosed with aplastic anemia and PNH, I…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I had no idea how much my life — and my career — would change. At the time, I was fully immersed in my job as a financial analyst, balancing deadlines, meetings, and the typical stresses of…
When people picture someone with an illness or disability, they often visualize a wheelchair, medical device, or some other visible sign that the person is facing health challenges. But there’s not always an external indicator that someone is living with an illness. As a Talkspace article explains, “An invisible…
Living with paroxysmal nocturnal hemoglobinuria (PNH) has changed so many aspects of my life, from how I care for my health to how I advocate for myself in the doctor’s office. But one of the most deeply personal shifts has been how I manage my relationships — with my…
It takes courage to be vulnerable, especially when sharing your story with strangers on the internet. After being diagnosed with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I’ve seen the impact storytelling has had on my life. We’ve all experienced moments that made a monumental impression on us.
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in 2017, I felt powerless. I had no control over what was happening to my body and found myself at the mercy of doctors and medical jargon I barely understood. At first, too overwhelmed to push for my own needs,…
Depression seeps in like a snake, slithering slowly as it makes its way into your life. You feel it there, but only a little. Then, one day, the full force hits you. Depression has a way of robbing you of your joy and happiness. It becomes regular to miss events…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) in May 2017, I thought the biggest battle I would face was the physical one. I was wrong. While the fatigue, blood clots, and pain were undeniably difficult, nothing could’ve prepared me for the mental and emotional toll this rare…
Battling my rare blood disorders, aplastic anemia and paroxysmal nocturnal hemoglobinuria, initially brought a sense of shame to my life. I was ashamed to be the sick girl who was living at home with her parents and dependent on them for daily needs. As Brené Brown wrote…
Life has a way of throwing unexpected challenges our way, and for me, one of them came in the form of the rare disease paroxysmal nocturnal hemoglobinuria (PNH). In May 2017, at the age of 27, I was diagnosed with this life-altering condition, which causes the destruction of…
Get regular updates delivered to your inbox.
