Recently, while talking to a fellow paroxysmal nocturnal hemoglobinuria (PNH) patient who is married, I mentioned that I always wonder how I’ll find a partner who understands my illness. She said that the right person will be a part of your life, no matter what. Her response brought me…
When you’re diagnosed with a chronic illness, no one tells you how it will affect other members of the family, particularly siblings. I grew up in a close-knit family, and my mom and dad raised three strong, morally driven women who are resilient enough to face life’s challenges. But that…
Life presents us with battles and trials we wouldn’t wish to face. Yet how do we choose to show up in the face of the unexpected? My journey through chronic illnesses, including paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, has offered countless life lessons. I’ve had enlightening moments…
I get it. That’s the first thing I want any patient reading this column to know. I understand what you’re going through; you are not alone. After my diagnoses with aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH), I experienced many emotions, including loneliness. Hearing that my blood…
You never think you’ll face health issues until you do. I wasn’t at all prepared for my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, and the news filled me with worry. I was thrust into a world of unknowns and forced to learn about two rare…
Living with rare blood disorders can bring a sense of loneliness. Of the billions of people on Earth, only a handful truly understand what I’m going through. In addition, trying to find a good support team and helpful health information can be daunting and stressful. With my diagnoses of…
In past columns, I’ve stated that I live with both aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). Today I want to explain how I navigate these two rare blood disorders simultaneously. In 2009, I was diagnosed with aplastic anemia, a condition in which the bone marrow doesn’t produce…
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 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…
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.
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