“What is it like to be diagnosed with life-threatening blood disorders as a young adult?” When someone asks me this question, my body language answers as I sigh deeply, tense my shoulders, pop my fingers, and fidget anxiously. It’s a loaded question with many answers. Being a young adult…
Recently, I heard someone say they were facing a “new normal” with paroxysmal nocturnal hemoglobinuria (PNH). It made me think about the many ways PNH has affected me, including forcing me to adjust to a new way of life. I am guilty of sometimes thinking that my life will…
The other day, I was telling my story of being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia to a woman over Zoom. Halfway through, she said, “Wow, you are so resilient.” After that, my mind began to wander. Many people have used this word to compliment…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria and aplastic anemia, my life became a disorganized mess. I received no warnings before the chaos ensued. It felt like I was trying to reach out and grab an issue so I could bring it close to me and resolve it.
Truth moment: I’m stubborn. I’d rather figure out problems by myself than ask for help. But when I was faced with two chronic illnesses, paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, I had to learn the importance of letting others help me. Once I was diagnosed, caregivers…
I’ll never forget the confusion and fear that began to take over my body when I heard the words “You’ve been diagnosed with PNH,” or paroxysmal nocturnal hemoglobinuria. It was 2016, and not only was I told I’d have to battle this illness, but I’d also been diagnosed…
When I first heard the term “brain fog,” I was confused about what it meant. After my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) and aplastic anemia, brain fog became one of my prevalent symptoms. I didn’t understand the impact it’d eventually have on my health over the…
Planning a trip and traveling somewhere new can be exciting, but also overwhelming. I have to ensure I’ve packed everything, planned a fabulous wardrobe, and tied up any loose ends before my departure. My two chronic illnesses only add to the stress of travel. Being diagnosed with paroxysmal…
In 2016, I received the news that changed the course of my life, words I never thought I’d hear: “You’ve been diagnosed with two chronic illnesses.” Turns out I was battling both aplastic anemia and paroxysmal nocturnal hemoglobinuria (PNH). My thoughts were filled with confusion and questions about…
In 2019, I gave a TEDx talk on relationships with chronically ill patients, titled “What your sick friends and family really need most from you.” Using the correlation of food, I provided what I hope was a thought-provoking speech on what it means to befriend a sick person. My…
Get regular updates delivered to your inbox.
