The first time I experienced vasovagal syncope, a sudden drop in blood pressure, and passed out from a blood draw was before my diagnosis of paroxysmal nocturnal hemoglobinuria (PNH). I remember being so nervous beforehand that my heart was racing. The second the needle went through my skin,…
When I started taking Soliris (eculizumab) after being diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), I was told there was a risk I could contract meningitis, which scared me. I began to make sure I carried my preventive antibiotics with me, and that I had a thermometer…
Because of paroxysmal nocturnal hemoglobinuria (PNH), I often have a troubling cognitive symptom called brain fog. It has gotten worse since I recently changed my medication. Among the most prominent features of my brain fog are stuttering and forgetting or combining words. Recently, for example, I was…
When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), the mental weight I carried to process, accept, and move forward with this new life was heavy. I had trouble wrapping my head around it to understand what had happened. At the time, I was fresh out of multiple…
I’m proud to have compassion and empathy for others. Connecting with people’s experiences, especially healthcare struggles, is very fulfilling for me. I can relate, offer advice, and give words of encouragement that I know will help. Because I’ve experienced medical trauma related to my rare blood disease, paroxysmal nocturnal…
Becoming a parent has taken me through a range of emotions, prompting new fears, thoughts, and views of my life — including about how my disease will affect my family. When I became pregnant in 2021, I started to picture several scenarios relating to my future child (or children) and…
One of my favorite podcasts, “Positivity Unleashed,” had an episode about self-love that surprised me. I immediately drew a connection to my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), and how it affects my mindset each day. After listening to the episode, I decided to dive in…
One experience that brings me the most joy is going to amusement parks. I love the atmosphere, including the smell of funnel cake, the screams from people on rides, the music, and the scenery. I’ve gone to most of the parks on the East Coast and love them all! But…
For much of my life, I had a bad case of “white coat syndrome,” which, according to the Cleveland Clinic, is when your blood pressure rises because of “the anxiety of being around doctors in white coats.” I was terrified of going to any type of doctor because anything…
Last in a series. Read parts one, two, and three. The months following the delivery of my daughter, Joelle, were some of the most wonderful months of my life. But they were some of the hardest, too, especially when the symptoms of my paroxysmal nocturnal…
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