In 2019, I was diagnosed with my rare blood disorder, paroxysmal nocturnal hemoglobinuria (PNH). I was in New York City to see a specialist and remember looking out the 23rd-floor window, worrying what this status would mean for my quality of life. I wondered if the little ants…
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, including topics like life expectancy and having children. So in addition to processing my diagnosis,…
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 how my life could move forward, much less in a positive light. After managing this mindset…
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 of Soliris (eculizumab) to treat my disease, paroxysmal nocturnal hemoglobinuria (PNH), for over four…
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 option of at-home infusions but decided against it. At the time, I was battling needle phobia…
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 my career. And I still don’t know the right answer. I put in the years and…
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 of him explaining my disease to me. He values my input and allows me to be…
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 to bring more awareness to my disease, paroxysmal nocturnal hemoglobinuria (PNH). During one of his…
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…
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 the same question, fearfully wondering if a normal life would be…
Get regular updates delivered to your inbox.