Joe Ellenberger visited one of his doctors in Pennsylvania recently. She was extremely excited to see how well he was doing - and he couldn’t figure out the enormity of her reaction.
Yeah, he was living a pretty normal life four years after being diagnosed with a rare blood disorder. And then it dawned on him. Not everyone who has paroxysmal nocturnal hemoglobinuria (PNH) is in his shoes. Never mind a normal life – some people lose their lives due to the disease.
"My body has responded 10 times better than other people to treatments," Ellenberger told FOX Sports. "That’s what I think is really crazy."
Ellenberger, 28, considers himself fortunate and the hand he’s been dealt has motivated him. He’s been given the chance to pursue his dreams and now he must follow through.
Jake might have actually been happier than Joe - Joe said it was Jake who would watch UFC lightweight fights and say ‘Oh man, you would kill these guys.’
One of those dreams came to fruition this week. Ellenberger finally signed a contract with the UFC. The last time UFC matchmaker Joe Silva called him was 2009 – just two weeks after he was diagnosed with PNH. He told him then it was a bad time (boy, was it ever). Now, all is right with the world. Ellenberger, whose twin Jake is a star welterweight with the UFC, plans on entering the Octagon in April or May.
"I guess it was like relief, but more like finally I get an opportunity to show everybody else what me and everyone around me has been thinking the last few years," Ellenberger said of his feeling when put his signature on the deal.
There were times in the last four years when Ellenberger thought he would never get the chance. After learning about the disease, he decided to shut down all training in October 2009. Truthfully, Ellenberger didn’t know if he should or shouldn’t exert himself physically, because PNH is so rare that he struggled to find doctors in his native Nebraska who knew much about it.
Ellenberger had to go to places like St. Louis and Pennsylvania to find specialists who knew all about the disease and even then the treatment - pills, shots and blood infusion - was very much experimental. So, as a precaution, he decided to stop training indefinitely.
That wasn’t much fun for him, especially since he didn’t feel unusually bad. PNH is so rarely diagnosed, because the symptoms can be subtle. The major one is fatigue, but as Ellenberger said, "everyone is tired."
"There were days I felt like I can get in there and wrestle with these guys," he said. "I felt good enough to."
But he had to put a promising MMA career on hold – he was 10-0 at the time – to make sure his body was right. In the meantime, he threw all his energy behind coaching Jake, who has been one of the top welterweights in the world over the last few years.
"I told everyone I know - the day that welterweight belt sits on top of his mantle, I’m totally fine with retiring that day," Ellenberger said. "That was my goal – that’s been my goal."
He said that remains his goal, but he certainly has some new ones now.
The treatments started working for him – quite well, actually. So much so that Ellenberger doesn’t have to take any more pills or shots anymore. His trip to the doctor for an infusion every two weeks is the extent of his care. And he’s cool with that. There are no plans to have a bone marrow transplant unless his situation dramatically changes.
"If I continue to be how I am now, be like this the rest of my life, I could probably do that," Ellenberger said.
I told everyone I know - the day that welterweight belt sits on top of his mantle, I’m totally fine with retiring that day. That was my goal – that’s been my goal.
- Joe on his brother Jake's career at 170lbs
He took his first post-PNH fight on May 21, 2011, nearly two years after his previous bout. Ellenberger beat Jeff Carstens that night with a kimura submission in the first round.
He’s gone 4-1 since coming back and a few months ago, UFC officials asked him if they could correspond with his doctors – they wanted to make sure he was fit enough to fight. The specialists said he absolutely was and that started the wheels in motion.
"It wasn’t a huge surprise for me," Ellenberger said. "There was constant communication with all parties."
That didn’t make it any less emotional. This week, Jake posted a photo on his Instagram of his brother signing a four-fight deal with the UFC. Jake might have actually been happier than Joe - Joe said it was Jake who would watch UFC lightweight fights and say "Oh man, you would kill these guys."
"I’m grateful," Joe said of the chance.
He views himself as something of a role model for people with his disease, most of whom are not in the same position as him.
"I’ve done well the whole time," Ellenberger said. "I have a chance to pursue my dreams. I know some PNH don’t have that luxury."