Fatiguing but Succeeding - Erin Fortin

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…

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.