Fatiguing but Succeeding - Erin Fortin

At the beginning of my journey with paroxysmal nocturnal hemoglobinuria (PNH), finding information about my rare disease was difficult and frustrating. Most of the information I found wasn’t accurate or up to date,…

Choosing a positive lifestyle after being diagnosed with my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), has not been easy. I went into shock immediately after hearing the news and couldn’t see…

Note: This column describes the author’s own experiences with Soliris. Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. I’ve received biweekly IV infusions…

When I was diagnosed with a rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH), in 2019, I began receiving treatment with Soliris (eculizumab) at an infusion center. I was given the…

One topic that’s often discussed among new paroxysmal nocturnal hemoglobinuria (PNH) patients is whether we can work full time. Since my diagnosis in 2019, I’ve struggled with deciding what to do about…

Throughout my past few years of living with paroxysmal nocturnal hemoglobinuria (PNH), I’ve appreciated having a solid relationship with my hematologist. I’m grateful that my appointments are open conversations rather than one-sided lectures…

My husband, John “JB” Fortin, drives the #34 Modified for the NASCAR Whelen Modified Tour, the sport’s oldest division. I’m so grateful that he and his crew use their platform…

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…

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…

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…