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Albie, one of our guiding stars

When Albie was born, his mom, Charlotte, said that he was “absolutely fine. Everything was fine for about two weeks.”
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As a father of two young children, Donnan recalls being afraid of what the future would hold prior to his diagnosis.
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Married with a newborn son, Ruthie was scared to learn that PNH was a life-threatening illness that at the time had no approved treatment.
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At only three months old, Evie's parents were told that her case was severe and that there were no approved or effective treatment options.
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Liz is our inspiration

Although physical challenges required Liz, her husband, and their children to adjust their lives in many ways, she doesn't let her disease hold her back.
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Make a difference for families like Tristan's

Tristan's parents experienced a whirlwind of emotions and fear after learning their 5-year-old son had such a rare and serious disease.

PNH REAL STORIES

Meet Joe

Diagnosed with PNH at 24 years old

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 6 weeks of numerous blood tests, Joe was referred to a hematologist who diagnosed him with paroxysmal nocturnal hemoglobinuria (PNH)—a rare, life-threatening blood disorder in which uncontrolled activation of the complement system leads to the chronic destruction of red blood cells.¹ Historically, approximately one-third of patients with PNH did not survive more than 5 years from the time of diagnosis and receiving supportive care.²

Joe, diagnosed with PNH at 24 years old, with his fiancée and child

When Joe was diagnosed, he 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 manage his PNH.

Joe, diagnosed with PNH at 24 years old, training for mixed martial arts

Joe, diagnosed with PNH at 24 years old, with his fiancée and child

“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 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 2 daughters, and is back in his routine.

References:

Hill A, Richards SJ, Hillmen P. Recent developments in the understanding and management of paroxysmal nocturnal haemoglobinuria. Br J Haematol. 2007;137(3):181-192.
Hillmen P, Lewis SM, Bessler M, Luzzatto L, Dacie JV. Natural history of paroxysmal nocturnal hemoglobinuria. N Engl J Med. 1995;333(19):1253-1258.