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First in a series. Receiving a diagnosis of paroxysmal nocturnal hemoglobinuria (PNH) in 2019 left me confused, scared, and desperate for more information. As my mom checked me out at the medical office counter, I did a quick Google search and scanned the first article I found. Reading 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…

In everyday conversations with family and friends, I’ll sometimes hear someone comment that a person they know has either strep throat or the flu. This immediately puts me in a defensive mode. My brain is flooded with questions aimed at protecting my safety: Who is sick? Have you been around…

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…

My social life has suffered as I’ve lived with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH). Many times my symptoms have held me back, keeping me from making plans because my health is so unpredictable. It’s frustrating. I hate coming across as a flaky friend who backs out…

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…

Living through a pandemic was certainly not on my bucket list, especially given my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH). Learning immunocompromised people are at a high risk for the COVID-19 virus was extremely nerve-wracking. Even though I looked healthy, I knew I was in that category. During…

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…

Shortly after being diagnosed with a rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), I began to experience attacks of stomach pain. They’d originate in my lower ribs and work their way down below my belly button. The attacks progressively got more severe and lasted longer: The first episode…

In 2019, I was diagnosed with my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH). I was in New York City to see a specialist and remember looking out the 23rd-floor window, worrying what this status would mean for my quality of life. I wondered if the little ants…