Joe Ellenberger fighting through medical condition that costs $440K/year

Thursday, December 13, 2012

When MMAJunkie, the leading news souce in MMA, hired Ben Fowlkes, expectations were high. Fowlkes has exceeed and excelled, offering a series of vital, exciting, insightful pieces on the world’s fastest growing sport.

In his latest, he chronicles the challenges of Joe Ellenberger, twin brother to UFC welterweight Jake. Excerpts appear below, but do yourself a favor, and read the whole thing.

It was the summer of 2009, and Joe Ellenberger was 10-0 as a professional fighter, coming off a dominant first-round TKO victory that he was hoping would be impressive enough to catch the eye of the UFC.

He’d also been feeling unusually tired lately. When the feeling persisted even after his fight, he broke down and went to see a doctor.

The diagnosis was paroxysmal nocturnal hemoglobinuria. PNH, for short. Estimates put the number of diagnosed cases of PNH in the U.S. at around 8,000.

“They told me I could never compete in another contact sport for the rest of my life,” he said. “They told me I’d be on a bunch of crazy drugs forever. They told me if I even got in a car accident or anything, I’d be in bad shape because my blood counts were so low and my blood was so thin. And then I guess the research said that I’d probably die before I was 30 years old.”

Two weeks later, UFC matchmaker Joe Silva called to offer him a fight against Mark Bocek.

It was an offer he couldn’t possibly accept. Now he had gone from wondering where his fighting career would be in 10 years to wondering whether he’d even be alive.

“A few days after they told me all that stuff, I made a decision in my own mind,” Joe said. “I just decided what they told me isn’t going to work for me. I can’t live like that.”

That January he first saw Dr. Monica Bessler. She told him about an innovative new drug called Soliris that had been shown to work wonders for some people with PNH.

Soliris clocks in at about $440,000 per patient per year, according to Forbes Magazine, which in 2010 earned it the distinction as the most expensive drug in the world.

His health insurance covers part of the cost, and he also gets some assistance from the National Organization for Rare Disorders (NORD), which helps patients pay for treatments like orphan drugs based on their financial need.

That summer he headed out to California, where his brother Jake was training for a UFC bout against John Howard in August. Slowly he found that he was able to make his way back onto the mats to help his brother prepare.

By that winter he was feeling better than ever, “And that’s kind of when I thought, well, there’s no reason why I can’t go back to competing now.”

No one thought it was a good idea. Not his doctors, not his family, not his new wife, Vanessa. It was only a year earlier that he was concerned merely with staying alive, and now he wanted to take his extremely rare blood disease and see how it reacted to fighting in a cage?

“Wrestling teaches you so many great things in life, and I think when you get denied something that wrestling mindset tells you to go harder to get it,” Ellenberger said. “They told me no, and that’s when that wrestling mindset took over.”

Joe was finally cleared to fight again in May 2011. He won his first fight back via first-round submission and then fought again in another victorious effort that July. In October he suffered the first loss of his professional career after dropping a unanimous decision to Justin Salas, who then vaulted into the UFC on the strength of that victory.

This past March, Ellenberger  rebounded with a third-round submission win over Jess Zeugin, which set up a superfight rematch with former Victory Fighting Championship featherweight champion Joe Wilk on Saturday in Omaha. If all goes well, this is the fight that Ellenberger hopes will boost him into the UFC alongside his brother.

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