Joe E.

PNH Patient
Joe's Story


Joe E.

Joe E.

Joe was completing his Master’s degree, engaged to be married, and on his way to becoming a professional mixed martial arts competitor when the symptoms began: unexplained fatigue, dark urine, back and stomach pain. After six weeks of numerous blood tests, Joe was referred to a hematologist who diagnosed him with paroxysmal nocturnal hemoglobinuria (PNH) – an ultra-rare, life-threatening blood disorder in which uncontrolled activation of the complement system leads to the chronic destruction of red blood cells. Without treatment, approximately one-third of patients with PNH do not survive more than five years from the time of diagnosis.1

When Joe was diagnosed, his says that he felt like his dreams were nearly shattered. He was worried that he would not have a future with his fiancée and was told he would never be able to compete in contact sports again. With this news, Joe could have simply thrown in the towel, but he didn’t. Instead, he made it his mission to educate himself and his family about PNH. Fortunately for Joe, his doctors were able to put him on medication specifically tested and approved for the treatment of PNH.

“I’ve never been one to back down in a fight, but when I was diagnosed with PNH, the prognosis was overwhelming. I had no choice but to view this disease as yet another challenge – one that I had to overcome. If anything, living with PNH has made me appreciate my time even more, and given me more drive to get back to doing what I love to do.”

Today, Joe continues with his treatment and shares his story with other patients with PNH to give them hope for the future. Joe is living his life on his own terms; he married his college sweetheart, welcomed the birth of his daughter, and is back at the gym training.

For more information on PNH, visit

1Socié G, Mary JY, de Gramont A, et al. Paroxysmal nocturnal haemoglobinuria: long-term follow-up and prognostic factors. Lancet. 1996: 348:573-577.