Fatiguing but Succeeding - Erin Fortin

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?…

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…

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…

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…

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…

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…

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…

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…

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…

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…