Fatiguing but Succeeding - Erin Fortin

When I do a Google search of my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), the first question that pops up is, “Can you live a normal life with PNH?” When I was diagnosed in 2019, I had…

Being diagnosed at age 24 with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, hit me out of nowhere. I was young and naive, and never anticipated that something so serious could happen to me at that…

A saying I wish would become more common is “not all disabilities are visible.” That’s the case for me and my invisible disease. Although I understand how people can’t always relate to or remember my limits unless they’ve lived…

Before I was diagnosed with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), I took having energy 100% for granted. Since I didn’t have fatigue, I could go about my day doing anything, even exercise (although it…

When I was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disorder, I was overwhelmed by all the information that was thrown at me. I had to process multiple questions: What exactly is PNH? How do…

A common phrase I keep seeing when it comes to living with a rare disease is “don’t let the disease define you.” But what if I did let my paroxysmal nocturnal hemoglobinuria (PNH) diagnosis define me? After all,…

My view of doctors and their expertise has greatly shifted through my years of living with a rare disease. At one time I held the weight of their knowledge, degrees, and experience to be the end-all-be-all because they were…

I’m from Long Island, New York, where couples choose either an over-the-top wedding or a down payment for a house; we chose a wedding. As in the movie “My Big Fat Greek Wedding,” my husband, John, and…

Going to the doctor for a wellness check or discussions about my health was unheard of during the first 24 years of my life. My needle phobia played mind games on me, tricking me into believing that the only…