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Jake Ellenberger's twin brother battles rare medical condition outside the cage

07/25/2013 07:00 EDT | Updated 09/24/2013 05:12 EDT
SEATTLE - As usual, Joe Ellenberger will be in the corner of twin brother Jake on Saturday night when the welterweight contender takes on Canadian Rory MacDonald in the co-main event of a televised UFC card at KeyArena.

Joe, a lightweight with a record of 14-1, also left his home in Omaha, Neb., for California in the buildup for the bout to help Jake (29-6) train. But only for two-week chunks.

That's because Joe essentially lives his life in two-week chunks.

In 2009, he was diagnosed with a rare bone marrow disease called PNH (Paroxysmal Nocturnal Hemoglobinuria). Many with PNH die in the first decade of being diagnosed due to damage to vital organs or blood clots.

The good news is Joe is managing the disease — and still competing in MMA in is own right. But every two weeks he has to undergo an infusion — to have the drugs he needs introduced into his body by IV. He fits the one-hour treatment around work and training.

Joe, 28, has no complaints. He is happy to be alive and be able to spend time with his wife and daughter. But the treatment means he has to be back home every 14 days.

"It's really the travel factor that gets to you," he said. "Because every 14 days I have to be at my place doing the same thing. And so I can't go anywhere longer than two weeks."

"We've been able to adapt easy," he added. "It could be worse."

Joe takes a drug called Soliris, which helps deal with the side effects of the disease. But because the disease is so rare, the FDA-approved drug is prohibitively expensive. Insurance and the National Organization for Rare Disorders help Joe meet the cost of more than US$400,000 a year.

It is clearly worth it.

"My doctors and everybody keep a real close eye on my blood counts and everything like that. But in the last two years, we haven't seen anything go down. Everything's been either going up or staying the same," Joe said.

"I guess I'm an anomaly. They don't know why. They like it. They want to use me to try to see if some other people maybe can use what I've been doing as an aid to their recovery. Maybe start training more, maybe better nutrition and stuff like that can help some other people with what they have."

As his disease was being diagnosed, Joe was invited to make his UFC debut against Canadian Mark Bocek. But his medical issues obviously took precedence.

A star wrestler at the University of Nebraska at Kearney, Joe made his MMA debut in 2005 during college. He did it for free so as not to jeopardize his amateur status.

He won his first 10 MMA fights and earned the Victory Fighting Championship title before his health issues arose. Initially he thought his fatigue was the result of a virus but blood tests did not identify anything. But the test numbers were unusual so he was sent to a hematologist.

He made his MMA comeback in May 2011, defeating Jeff Carstens by first-round submission. He has gone 3-1 since and has hopes of another shot at the UFC.

With five lightweights bouts on this weekend's UFC card, he had made it known he is available in case of any late injury.

"I'm already here," he said. "I've got my mouthguard. So that's all I need. I'm ready to fight."

Joe says watching his brother clamber into the cage is far harder than doing it himself.

"I feel when I'm in there, obviously I have a lot more control over my own destiny," he said. "Whereas when it's him, I don't have control and I'm kind of a control-freak. It's a lot tougher watching him fight. And I think he'd probably say the same thing. When he's in my corner, he gets super-nervous."

Joe is older than Jake by one minute. But he acknowledges that his bulkier brother got the "good explosive muscle fibre genes."

Joe often acts the part of Jake's opponents during training camp. But more than that, he serves as a daily inspiration.

And when it comes to fight night, Jake says there is no one he would rather have in his corner.

"Who knows me better in this world than my brother?" asked Jake. "I don't need an A-list name in my corner. That's not what this is about. It's somebody you trust with your life, somebody that you would trust in combat, as we would say.

"He knows me well, just being able to push yourself. He knows what motivates me, what doesn't work."

Plus if there's one voice he can pick out of the crowd, it's his brother.

Joe, meanwhile, says that doesn't mean the hard-punching Jake takes it easy on him when they spar.

"I think he's cleared my sinuses on a few different occasions," he said dryly.

Away from the gym, Joe has earned a master's degree in sports administration.

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