Fatiguing but Succeeding - Erin Fortin

Erin Fortin was diagnosed in 2019 with paroxysmal nocturnal hemoglobinuria (PNH) at age 24. She works part-time doing administrative work, is married to her husband, John, and has a daughter named Joelle. Erin has remained positive throughout her medical journey, always looking for silver linings. She hopes to continue spreading awareness through her column and increasing her involvement in the PNH community.

A message to my PNH community as I bid readers farewell

The time has come for me to bid farewell to readers of my column. I took some time off from writing to reflect on my purpose, spend time with my growing family, and focus…

July 19, 2023 by Erin Fortin

What do my PNH symptoms feel like?

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…

July 12, 2023 by Erin Fortin

Interacting with fellow PNH patients helps me find answers

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,…

July 5, 2023 by Erin Fortin

3 tricks to staying positive since my PNH 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…

June 28, 2023 by Erin Fortin

My farewell letter to Soliris, my PNH treatment for over 4 years

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…

June 23, 2023 by Erin Fortin

4 unspoken rules of etiquette to keep in mind at the infusion center

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…

June 14, 2023 by Erin Fortin

Can a PNH patient work full time?

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…

June 7, 2023 by Erin Fortin

What makes a good doctor? For me, it’s our relationship

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…

May 31, 2023 by Erin Fortin

When questioned about PNH, I had to learn how to answer

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…

May 24, 2023 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…

May 17, 2023 by Erin Fortin

Answering one of the biggest questions after my PNH diagnosis

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…

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