Fatiguing but Succeeding - Erin Fortin

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…

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…

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…

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…

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)…

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…

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…

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…