UFC Fight Night 44's Joe Ellenberger fights on despite rare blood disease

(This story appears in today’s edition of USA TODAY.)

It was five years ago this summer that lightweight Joe Ellenberger got his first offer from the UFC.

It was an offer he’d been waiting for since he started his MMA career, and it was also an offer he had to turn down. That’s because, at the time, he wasn’t sure if he’d live long enough to complete it.

“It wasn’t the way I’d envisioned things going,” Ellenberger (14-1 MMA, 0-0 UFC) says now with a wry chuckle. “But here I am.”

In the summer of 2009, Ellenberger was diagnosed with paroxysmal nocturnal hemoglobinuria (PNH), a rare blood disease with only about 8,000 diagnosed cases in the United States. It usually shows up between the ages of 20 and 40, and when it does, it typically begins destroying the body’s red blood cells at an alarming rate.

Ellenberger was 24 when he got his diagnosis. The research said he’d be lucky to live too far past 30, and doctors told him he’d never participate in contact sports again, much less fight for a living on the biggest stage in MMA.

Yet on Saturday night, Ellenberger, now 29, will take on James Moontasri at UFC Fight Night 44 in San Antonio (Saturday, 10 p.m. ET, Fox Sports 1) – assuming, that is, that he’s finally found an opponent who will still be there come fight night.

You see, at first Ellenberger thought the biggest obstacle to a career with the UFC would be his blood disorder. Many promoters would be hesitant to sign a fighter with such a serious medical condition, just as many state athletic commissions might be reluctant to clear him to compete.

But Ellenberger decided early on that he wasn’t going to let his career go down without a fight, and thanks to a drug known as Soliris – at one time the most expensive drug in the world, according to Forbes magazine, costing an estimated $440,000 per patient per year – he was soon back in the cage and back on the UFC’s radar.

But before the UFC would sign him, it wanted to be certain that he could get licensed.

“They did some pretty rigorous testing just to make sure that, if I were signed, I could pass medicals anywhere they’d need me,” says Ellenberger. “I’d been through it with the Nebraska commission and places like that, but they don’t just fight in one state. They wanted to know that I could fight in Brazil, Canada, Nevada, New Jersey, California – wherever. I just made sure that I had all my I’s dotted and my T’s crossed to make sure that when the time came, they’d know I could get cleared.”

According to UFC officials, once Ellenberger passed those medical exams, the organization had no concerns about his fitness to compete in the cage. The only problem then was finding him an opponent, as one after another dropped out due to injury or was rescheduled for other fights, only to be replaced by another opponent who would eventually fall prey to the same fate.

All in all, Ellenberger went through five prospective opponents in order to get to Moontasri (7-1, 0-0). It made for something of an emotional roller coaster, he admits, but it’s worth it, and not just for his own sake.

“Joe is an inspiration to other PNH patients, especially the younger ones,” says Judith Paulette, the committee chair and former president of the PNH Research and Support Foundation. “When they get this diagnosis, they are pretty disoriented to begin with. It often comes out of the blue, and what your life plans were seem to be totally in disarray. To hear from someone who has navigated that and decided, no, I don’t have to give up what I love to do, that’s really exciting for them to see that example.”

These days, Ellenberger serves on the foundation’s patient committee, and one of his roles includes calling other young patients to lend support and guidance after a diagnosis. To his fellow PNH sufferers, his fight career is about more than wins and losses.

“It’s a little bit of awe, this feeling like, ‘Yeah, you go,’” says Paulette. “But it’s also a little bit of, ‘Wow, I hope he doesn’t get hurt.’”

Despite her concerns, Paulette and many other foundation members will be watching when Ellenberger finally steps in the UFC cage. As for Ellenberger, he knows he’ll have more than just his coaches in his corner.

“If I can fight in the UFC, it shows that we can overcome a lot of this adversity we’ve been dealt,” Ellenberger says. “We just have to do it the right way, and not give up.”

For more on UFC Fight Night 44, stay tuned to the UFC Rumors section of the site.