The UFC has some tough fighters in it. But 35-year-old Joe Ellenberger never thought that his most difficult opponent would be within himself. That is, his paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disease. But over the last 11 years, Ellenberger has learned more about his disease, his health, and himself. Now, Patient Worthy is ready to share his insights with you.
Paroxysmal Nocturnal Hemoglobinuria
Paroxysmal nocturnal hemoglobinuria (PNH) is a rare blood disorder that impacts red and white blood cells, as well as blood platelets. The condition results from mutated PIGA genes. PNH cells rapidly rise and the immune system reacts. As a result, healthy blood cells are damaged or destroyed. Red blood cells release excess hemoglobin into the blood.
The condition is called “paroxysmal” because it often spontaneously occurs, and is not inherited. Most people survive around 10 years after diagnosis. Symptom onset typically occurs between the ages of 35-40. These symptoms include fatigue, chest pain, headache, difficulty breathing, dark and bloody urine, male sexual dysfunction, and kidney disease. Learn more about paroxysmal nocturnal hemoglobinuria.
At 35 years old, Joe Ellenberger is pretty happy. He has a lovely wife, three beautiful children, a good job, and a position as an assistant wrestling coach. When he looks back at his journey, he says:
“I try to see a silver lining in everything, and I think where I’m at now, I’m not upset, I’m not bitter…and I think being able to overcome a lot of that adversity through my life has definitely helped me.”
However, Joe’s experience with paroxysmal nocturnal hemoglobinuria was no easy feat.
Paroxysmal Nocturnal Hemoglobinuria: The Diagnosis
11 years ago, Ellenberger was “Excalibur,” a top prospect in the UFC’s lightweight division. Then, in October 2009, his condition was diagnosed and doctors were not hopeful. In fact, they told him that they weren’t confident he would even live to see his 30th birthday.
Ellenberger wasn’t ready to give up his fighting career. So he started taking Soliris, which cost him $440,000 (before insurance and NORD kicked in). In 2011, Ellenberger went back to the UFC and officially became a fighter.
Paroxysmal nocturnal hemoglobinuria couldn’t bring Ellenberger down. But unfortunately, he was sidelined with another health problem just 3 years later. First, he excelled in the UFC. He took on, and beat, James Moontasri. But six months later, he discovered that Moontasri detached Ellenberger’s retina in the fight. He underwent surgery within a week.
By 2019, Ellenberger was no longer fighting. In fact, doctors told him not to. So Ellenberger lives as a family man, a coach, and a husband. He manages his PNH, although it still requires maintenance. But most of all, he keeps up a positive attitude. He advocates not just for the kids he coaches, but for the entire rare disease community, to “just embrace the journey.”