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Twin’s Disease Fuels Ellenberger

“He’s a great ground fighter but unfortunately for him this fight starts on our feet. He’s going to have to taste defeat for the first time.”

To understand Jake Ellenberger the fighter, you must understand Joe Ellenberger, his twin brother. You must understand how it feels to live most of your life on the right side of being one in a million, only to wake up one day and suddenly find yourself on the wrong side of being one in a million.

“One in a million people in the world have this disease,” Joe Ellenberger said. “It’s about as rare as winning the dang lottery, really. I felt helpless, kind of in shock. This is real and pretty serious. I always wanted to be in control. With this I have no control over what my body is going to do.”

In the span of a few months, how does a spectacularly healthy young man devolve from being an elite athlete to a chronically exhausted medical mystery? This is the ongoing plight of Joe Ellenberger, whose story ultimately manages to be as inspiring as it is harrowing.

Before three letters changed his world, 24-year-old Joe had carved a reputation as an extraordinary doer who could accomplish more in a day than most people did in a week. If blue-collar America needed a poster boy, the earnest son of a Midwestern iron worker would neatly fit the bill. Holder of college bachelors and masters degrees, the restless overachiever was also a two-time All-American wrestler at the Division II level and earned three selections as an Academic All-American. Cherry on top: The explosive lightweight racked up a sterling 10-0 record as a professional mixed martial artist.

Together the driven Ellenberger brothers had forged a pact: The Nebraskans resolved to rewrite history and become the first-ever brother tandem to claim UFC titles. Yet, just when the dominoes in their master plan began falling in their favor, just when knockout artist Jake Ellenberger had signed with the UFC, Joe Ellenberger’s chiseled body inexplicably and abruptly began to betray him.

The rapid regression intensified late in the summer of 2009. His urine appeared much darker than usual, a constant pain afflicted his abdomen. Alarming patterns in Joe’s blood work signaled a problem, but baffled doctors spent weeks trying to pinpoint a culprit. Medical experts at the Mayo Clinic in Minnesota were enlisted to solve the puzzling case.

Joe headed to wrestling practice one day when his phone rang. It was the doctor’s office.

“We need you to come in to see the doctor,” a voice on the other end said.

“I’m not coming in right now,” Joe said, fed up with the litany of doctor visits and blood work-ups, and increasingly skeptical that he was being unnecessarily milked for extra money. “Whatever it is, you can just tell me over the phone.”

So they did. Joe had tested positive for PNH. The letters represented three ugly words Joe had never heard before: Paroxysmol Nocturnal Hemoglobinuria.

Yet there was no sense of urgency on Joe’s part. In fact, he failed to see the big deal, imagining that what he had was on par with a passing illness like mononucleosis.

“Ok, cool,” he told the official. “Thanks. Bye.”

Joe casually texted the results to his family and his wife and headed off to practice. A few hours later, when he finished practice, Joe picked up his cell phone and discovered he had been bombarded with text messages and missed calls. Once home, he jumped on Internet search engines and learned that his relatives fears were well-founded: PNH is a rare, highly unpredictable blood disease. Some estimates are that roughly half of all PNH patients will die within 10 years of their diagnosis.

Oddly enough, PNH is not inherited from parents at birth, nor is it contagious from person to person. Rather, it is an acquired genetic mutation that attacks a person’s red blood cells, often causing potentially life-threatening blood clots and damage to vital organs.

“I thought I could take a pill and be better in a week,” Joe said.

If the blood clot in Joe’s abdomen broke away it could kill him. Doctors put him on blood thinners and ordered him to cease training immediately.

“You can’t ever do any contact sport again,” a doctor told him.

Joe tried to stay strong, searching for meaning in his ordeal. He leaned hard on his faith, believing that God planned to use him as an instrument for a greater good than his UFC dream.

“That’s what eased my ‘I might die’ thoughts,” Joe said.

With his brother battling an unknown foe, Jake Ellenberger poured even more of himself into MMA. At UFC 108, Jake was pitted against Xtreme Couture’s Mike Pyle inside the Octagon. Joe made the trek to Las Vegas for the fight, cornering his “little” brother.

Backstage, before the fight, Jake turned to Joe and said, “This one’s for you.”

Joe deemed it an unusual dedication.

“I didn’t really envy Mike Pyle after that,” he said.

As it so happens, it wasn’t a good night to be Mike Pyle. Five minutes and 22 seconds into the bout, Pyle wilted under a brutal fistic assault. It was Jake’s first UFC victory, and his 14th TKO – tops among active welterweights in the UFC.

Jake (23-5) noted his brother’s predicament has affected him, just as the tragic death of his favorite uncle Stu did when he perished during an ironworking accident 13 years ago.

“It just really lit a fire in me,” Jake said of Joe’s every day ordeal outside of the cage. “I’m taking everything I do in my life a lot more serious. It’s brought me closer to God. Now every fight is like my last. I’m not in there just fighting for me – I’m fighting for my brother, I’m fighting for my family. It’s real personal. I have a different motivation when I compete. I’m going to win or I’m going to die trying. Fighting for my brother is a burning fire in me.”

Since his brother’s diagnosis, Jake has notched two TKO victories in the UFC and seeks his third straight win at UFC 126 Saturday night against unbeaten submission wizard Carlos Eduardo Rocha. Ellenberger had lobbied for a bigger fish. Last fall, via Twitter, he called out No.1 contender Jake Shields, mockingly referring to the Cesar Gracie protégé as “Fake Shields” and adding “Jake Shields’ cardio won’t be a factor if he fights me next. I won’t keep him around long enough to get tired.”

Ellenberger was originally slated to fight Jon Fitch at UFC 126, a match that could have potentially accelerated his path toward the top. But Fitch was instead inserted into a UFC 127 main event against B.J. Penn in Australia.

“There’s no disappointment at all,” Jake said of the switch. “I’m honored to still be competing for the UFC. Would I still like to fight Fitch? Absolutely. I think that down the road I will. That’s just a postponement of the inevitable. If I’m going to get a shot at the title I’m going to have to go through a guy like Fitch.”

As for Rocha, Ellenberger said he knows little other than that his opponent is Brazilian and owns a BJJ black belt.

“I don’t think he’s fought high-caliber guys, so I’m going to give him his first loss,” Ellenberger said. “He’s a great ground fighter but unfortunately for him this fight starts on our feet. He’s going to have to taste defeat for the first time.”

If Rocha’s strategy does indeed center on his jiu-jitsu, he could find it difficult to take down Ellenberger, a former Division II collegiate wrestler. Rather curiously, Ellenberger’s abbreviated wrestling background parallels that of 170-pound kingpin Georges St-Pierre. The vast majority of MMA fighters, of course, start as wrestlers and then graduate to MMA. Jake Ellenberger did exactly the opposite. He began practicing MMA and then started wrestling in college around his 21st birthday. The former high school swimmer and diver walked on at the University of Nebraska-Omaha, which had won multiple NCAA Division II national wrestling titles.

“I said, ‘What the heck, I’m going to try wrestling and see what I can learn,” Jake said. “I hoped it would help with my MMA career, which obviously it has a lot. But in that first year and a half I just got beat up and owned every day. It was hard to keep doing it when you’re not good. That was not an easy room to learn wrestling in. Wrestling is not a fun sport. It’s one of the hardest sports -- you go through a lot of hell. It’s not rewarding whatsoever, so I never really had the ambition to be a standout or a national champion.”

While Jake hunts for a UFC title shot, Joe is happy to report that his condition and quality of life have improved immensely since he discontinued blood thinners and began taking a promising prescription drug called Soliris— which, according to, costs roughly $409,500 for a one-year supply and ranks as the most expensive prescription drug in the world. Joe said he is fortunate because his insurance pays for most of the “miracle drug,” and that a charitable organization called the National Organization for Rare Disorders (NORD) funds the rest.

“I feel a heck of a lot better,” Joe said.

Against incredible odds, Joe Ellenberger’s strength and endurance has improved so much that he has resumed MMA training and actually hopes to step into a cage sometime in April or May of this year. He says doctors have even given him the green light. His return is not set in stone, however, since Joe said that he receives intravenous infusions of Soliris every two weeks.

“I will pretty much live my fight life two weeks at a time from here on out,” said Joe, who will again be cornering his brother at this weekend’s UFC event. “I’m just relishing the experience I have now. I know I’m not going to be a fighter for too long. I’ve got to make a run, I guess. As long as everybody’s on board, I’m ready to go.

“There’s a peace now because I gave it to God. I would much rather be the guy to have this than somebody else who is not as mentally strong. I’m the kind of guy that will beat it.”