Have you ever listened to a song and connected with the lyrics instantly? When you want to keep the song on repeat, or Google the words and sit staring into space while interpreting them? Listening to music has always been my favorite way to escape reality; in fact, certain songs…
We’re now well into the holiday season of celebrating, sharing family time, and offering gifts! As a person with paroxysmal nocturnal hemoglobinuria (PNH), I’m excited to put forth the following three items for your seasonal giving. I have two already and plan to ask for the third this year.
I recently accompanied my grandmother to one of her doctor appointments because she’d expressed feeling nervous and having boundaries when it came to her health. I asked the doctor questions, relayed his message in simpler terms to my grandma, and spoke up as her advocate. The doctor was impressed by…
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…
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