Fatiguing but Succeeding - a Column by Erin Fortin

The lingering question after my PNH diagnosis was ‘Why me?’

From the moment I was diagnosed with my rare disease, paroxysmal nocturnal hemoglobinuria (PNH), I felt like I was constantly searching for the answer to the question “Why me?” My mind would drift in different directions, and it wasn’t until recently that I finally found an answer. The…

How my support system lifted me up after a PNH diagnosis

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 age. The day I was diagnosed, I went numb after the…

Using the spoon theory to map out my energy plan for the day

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 wasn’t my favorite activity), without any problems. I liked that I…

The emotional road to my first PNH treatment

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 I explain it to others? What does this mean for my…

I shouldn’t let my PNH diagnosis define me — or should I?

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, I’m stronger, kinder, more flexible, and a lot tougher after living…

News flash: Not every doctor knows what a PNH diagnosis means

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 professionals when it came to anything related to medicine. I wouldn’t…

Spoiler alert: That PNH diagnosis wasn’t a dream

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 reason for invasive blood draws, vaccines, and IVs was to cause…