Jake Ellenberger’s Twin Brother Fights Paroxysmal Nocturnal Hemoglobinuria Outside the UFC Cage

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.

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