Imagine if you will being a 10-0 professional fighter, on the rise, and getting the call from UFC matchmaker Joe Silva inviting you to the big show.
Sounds like a dream come true, right?
Well, for Joe Ellenberger it was a dream and a nightmare all rolled up into one. Ellenberger, while working his way to the perfect 10-0 record, had started to become sluggish on a daily basis, sleeping for 12 hours some days and just not feeling himself.
The Nebraska fighter finally consulted doctors and right away they knew something was wrong. It was in this time that Ellenberger got the call he had long been waiting on, and when he picked up the phone it was Joe Silva on the other line.
“I actually had a call from Joe Silva to fight in December 2009, in October, and I had gotten diagnosed about three days after he called me, so that was pretty devastating,” Ellenberger revealed in an interview with MMAWeekly.com.
“I got offered to fight Mark Bocek in one of the TUF finales, the heavyweight one I think. At the time I wasn’t fully diagnosed, but they knew something was really wrong with me, plus I was still in school so I kind of gave him the ‘I don’t know yet’ and he obviously went on to somebody else. When I figured out what I had, that was a pretty big blow.”
Not only did Ellenberger have to deal with missing his shot at going to the UFC, but he later found out the disease that was causing all the problems was literally life threatening.
Now it wasn’t a matter of giving up his fight career, Ellenberger was literally fighting for his life.
“It’s a rare enough disease that not many doctors have even heard of it. So you have to go to a hematologist that studies bone marrow failure and blood diseases. When I got diagnosed it was a lot of questions, and not really knowing what was happening. Obviously research and statistics said my life itself was the big focus, versus competing or doing other stuff that I wanted,” Ellenberger stated.
He was diagnosed with PNH (paroxysmal nocturnal hemoglobinuria), which starts as a bone marrow disorder and then affects the red and white blood cells as well as the platelets in the blood. Essentially, the disorder causes the bone marrow to produce red and white blood cells without a certain protein code and because they are lacking this protein the body targets them as they would bacteria and destroys them.
As Ellenberger explains, the risks go well beyond just sleeping and being tired. If the symptoms continue or get worse, a patient with PNH can lose his life.
“The two risk factors for people that were dying of this disease were there was a clotting factor with all the red blood cells breaking down and they were clumping up and people were finding clots on their brain, heart, lung, and obviously that’s a fatality. The other issue was when your red blood cells break down your body is now filtering like the red blood cells and stuff inside your red blood cells that your liver, your kidneys, and your organs aren’t used to filtering out so it damages them real bad after and it’s more of a long term effect,” Ellenberger said.
“They give most people that five- to 10-year life expectancy once they’re diagnosed, because of the anemia in the red blood cells breaking down. The blood clotting factor that could just happen at any point in time. You don’t know. And then after 5 or 10 years of your kidneys and liver filtering for hemoglobin, they just shut down on you.”
According to medical studies, PNH patients could have several treatments for the disease including rounds of steroids all the way to blood transfusions. In most cases, patients with PNH will eventually require a bone marrow transplant to survive.
The news was obviously quite unsettling to Ellenberger. Growing up with his fraternal twin Jake, who is now a top UFC welterweight, both brothers had envisioned a day when they would stand side by side with title belts wrapped around their waists.
After the diagnosis, Joe Ellenberger thought he’d never see that day happen.
“At first it didn’t even seem real. I was just like trying to wake up from a bad dream. The time it really set in was me and my brother are really close and I guess we had envisioned when we started training and competing, our goal was to win world titles together and be the first twins ever able to accomplish that feat,” Ellenberger said.
“Once I figured out only half of us are going to be able to do that, that’s when it kind of hit home and I kind of emotionally took the biggest hit.”
While the news was devastating, Ellenberger wasn’t about to just give up and let this disease define him. After being treated with blood thinners to deal with the potential risk of blood clotting, he sought out one of the foremost experts in the United States who deals with PNH.
Dr. Monica Bessler is a leading researcher and doctor dealing with bone marrow disorders like PNH, and who recently launched an entire center in Philadelphia to study diseases like PNH. She met with Ellenberger to see what she could do to help.
The treatment suggested by Dr. Bessler would cost around $400,000 according to Ellenberger. He immediately felt his hopes had been dashed. But his new doctor assured him that between insurance and private funding, he would be able to receive the treatments he needed to hopefully quell the disorder and allow him to get back into his everyday life.
In March 2010, Ellenberger started receiving treatments through blood infusions and has to do so every 14 days for the rest of his life. Despite the obvious struggles that this could cause, again Ellenberger was determined to get back to his life as an athlete.
“(Dr. Bessler) said you’re a good judge of your body since you wrestled in college, were something wrong you’d know how you feel, so if you get to that point call us. If you want to, you can roll around and do some stuff. That from doing nothing was pretty awesome for me. Just being able to get with my brother and scrap a little bit was pretty awesome,” Ellenberger stated.
Slowly but surely as the blood infusions continued, Ellenberger’s blood count got better and better and he was able to do more and more in the training room. He went along with his brother Jake during his training time getting ready for fights, and started to feel the energy to compete building back up inside of him.
“Now around December/January, Jake had his fight with Carlos Rocha lined up and we get into the sparring and training again, so I pretty much started camp with him,” Ellenberger explained. “My weight starts coming down, I start getting in shape, and then there was a couple of local shows. We just kind of sat down and said, we’ve got to make a run at it now.”
Now back in full fight shape just two years removed from being diagnosed with a disease that was supposed to end his life within five to 10 years, Ellenberger is living the dream again.
He will compete on a show this weekend called ‘Disorderly Conduct’ in his home state of Nebraska, where he faces Jeff Carstens in his first fight in two years.
The opponent doesn’t really matter to Ellenberger however, because the bigger picture is him being able to once again do what he loves. He understands that when he was first diagnosed as a PNH patient, he could have seen that as a death sentence, but instead looked at it as another challenge, or another hill to climb.
This weekend, win, lose, or draw, Ellenberger will feel like a victor.
“At any point it could be yanked away just like that. So really I have the opportunity now, so I just want to relish and really enjoy my time even with my training partners and coaches just being able to do this,” Ellenberger stated.
“This is for every single person that would die to be in my shoes, and everyone that’s ever been through this adversity, they think they have to give up. It’s about putting your head down, putting your faith in God, and trucking on forward.”