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

by Ben Fowlkes | source: mmajunkie

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.

Read entire article...

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Recent Comments »

adame09 site profile image  

12/14/12 12:04 PM by adame09


Hugh Jaynus site profile image  

12/14/12 9:46 AM by Hugh Jaynus

Really inspiring read.

Seraldo Babalu site profile image  

12/13/12 8:18 PM by Seraldo Babalu

Kind of FRAT but whatever.About seven years ago I noticed petechiae on my hands and feet and also bruises appearing on my body but I couldn't remember how I got them. Of course I ignored it like any real man would until my gums and nose started bleeding for no fucking reason. After that I went to see the doctor, they took blood and sent me home (the spot on my arm where the needle went in blead for about three hours). The doctor said it I would hear from them in about a week.So I went home and three hours later my phone started ringing, it was the doctor. She told me my platelet count was low, WAAAAAY low. The number of platelets for the amount of blood she took should be between 120-150, there were 9 in my sample. She booked me an appointment to see a blood specialist the next day.Anyway, long story short, I was diagnosed with immune thrombocytopenia and spent the next two years on and off steroids and getting weekly blood tests until the count was back to normal and stayed there without the roids.That two year period sucked a fat dick and now I have bacne scars. But I couldn't imagine dealing with that shit for five years let alone a lifetime. So all that being said, I will always root for this red blood cell deficient motherfucker.

temp170618 site profile image  

12/13/12 5:13 PM by temp170618

Its a genetic issue....its not hereditary and it is 100% non contagious...its just a hiccup in your DNA.

JeffersonDArcyChoke site profile image  

12/13/12 5:03 PM by JeffersonDArcyChoke

I hope he wins. That said, I'd rather see Dana White flip him a 20K "tip" towards medication than a drink server or Blackjack dealer. I'm not saying it's not cool to tip a working man/girl a fuckload but I think it's cooler to throw tips that really improve life quality and here is one of them. Helping with one RX would do more for Dana's rep than stories of him tossing chips at the guy who brought his steak in Vegas. Dana does cool shit. By no means am I suggesting he doesn't. Just a story like this makes me wish I had the scratch to help out. It'd be cool if a guy who did would flip a chip his way.

catgobling site profile image  

12/13/12 4:15 PM by catgobling


Addo site profile image  

12/13/12 4:04 PM by Addo

Same. Really want to see him get a shot.

BigfootsChin site profile image  

12/13/12 1:07 PM by BigfootsChin

What an inspiration, really hope he makes it to the big show, not many people more worthy!!

stonepony site profile image  

12/13/12 11:29 AM by stonepony

It costs something like $100m to bring a new drug to market, and the cost of this particular drug is being recouped by a handful of people. Hence the price. America carries a huge amount of the total global R&D burden, you're going abroad to get what we developed here. Those systems could not exist, without our work.Where do you think this miracle drug was developed? India? No. It was developed in America, like the majority of life-saving drugs and treatments are.

1oldfart site profile image  

12/13/12 11:23 AM by 1oldfart

440k ? That's why so many people are turning to medical travel. I've done it with medical and dental, saved a ton of money and received superior service. They really take care of you because they want the word of mouth business.