Only 13,000 documented cases of Behcet’s disease exist in the United States, and one of them belongs to Neil Melanson, the head grappling coach at Xtreme Couture Mixed Martial Arts in Las Vegas.
The rare autoimmune disorder has already left the 33-year-old Sturbridge, Mass., native blind in one eye and deaf in one ear. He rises each day knowing it has the potential to be his last with the ability to see and hear. Chronic pain — Behcet’s can result in lesions and various ulcerations — remains a constant companion for Melanson, who, despite being born with the disease, spent seven years in the Navy and also served as a post-9/11 federal air marshal.
“It causes inflammation, and that inflammation can lead to all these different symptoms,” he says. “It’s a very painful disease. There are a lot of people that it just destroys their life.”
No known cure exists for the disorder, and the effectiveness of treatment can vary from person to person. In Behcet’s patients, an overactive immune system fails to recognize various parts of the body and attacks them as a result. Physical exhaustion and stress can trigger flare-ups, some subtle and some severe.
“For me, it’s blindness,” Melanson says. “It also affected my hearing. I don’t hear very well at all. I can’t watch TV without reading the captions.”
Melanson went completely blind in both eyes for two months back in 2005. Because Behcet’s was so uncommon, he had difficulty finding doctors to diagnose and treat him. Desperation moved in. Eight weeks felt like eight years.
“It’s such a rare condition,” he says. “Until I went blind, they had no idea what the hell was going on with me. That’s when I got diagnosed. It took forever to find the right doctor. I was going blind, and I had four specialists tell me, ‘There’s nothing we can do.’”
At the age of 28, he had resigned himself to the fact that he would never see again. Few realities bite so deeply.
“I remember calling my brother and telling him, ‘Hey, I’m going blind,’” Melanson says. “He said, ‘OK, I’m going to build you a room in my basement. Come stay with me, and I’ll take care of you. We’ll figure out what’s going to happen.’ At that point, I was planning my life as a blind person.”
Someone else was watching over Melanson, too.
“A friend of mine just wouldn’t quit trying to find a doctor, and he ended up finding this one that knew right away,” he says. “That saved my ass.”
Had Melanson’s condition gone untreated much longer, permanent blindness would have set in, and life as he knew it would have come to a standstill.
“Once it’s triggered, the damage can be irreversible,” he says. “Right now, I can drive. I can lead a normal life. But if my disease were to trigger, there’s a chance my right eye wouldn’t recover, and there’d be a massive lifestyle change. I wouldn’t be able to do a lot of things for myself.” (above).
Doctors placed Melanson on Remicade, an experimental treatment for those afflicted by Behcet’s. The drug, administered intravenously every six weeks, worked wonders for him.
“Up to the point when I got Remicade, no medication was working for me,” he says. “It saved my life. All my symptoms went away. My right eye came back, and I could live a decently normal life.”
Still, the threat of blindness hangs over him. Only his closest confidantes — professional fighter and wife Erin Toughill chief among them — understand how strongly that fear runs within him. It never leaves.
“It’s a big concern, and it’s a big worry,” Melanson says. “It haunts me every day, unfortunately. My wife knows how much it affects me, but with other people, I don’t really let them know. I try not to talk about it too much. The chances of me going blind are very significant. It’s very scary.”
As one might suspect, the disease has thrown a wrench into his professional life, as well.
Having trained extensively under UFC veteran Karo Parisyan and famed judo guru Gokor Chivitchyan at the Hayastan Studio in California, Melanson arrived at Xtreme Couture in 2008. He has to strike a constant balance between fulfilling his duties to one of the world’s most prominent MMA gyms and keeping himself healthy and out of harm’s way.
“I still have a lot of pain problems,” Melanson says. “I have to make sure I don’t get exhausted, and I’m subject to infection, so I’ve got to make sure I don’t get staph. I could never have a fighting lifestyle.”
A former power lifter, he can no longer hit the weights, as the risks associated with overexertion far outweigh the benefits. Melanson even avoids jogging.
“I can’t train too much,” he says. “I can grapple a couple times a week, and I can teach, but I have to eat well and sleep well and take very good care of myself. If I overtax my body, I can get really, really sick. I have a very complicated health lifestyle. I’m physically very sensitive to a lot of things.”
Despite his limitations, Melanson has earned the admiration and respect of UFC hall of famer Randy Couture — the man who pegged him to replace 2007 Abu Dhabi Combat Club Submission Wrestling World Championships winner Robert Drysdale at Xtreme Couture. The two struck up an immediate kinship.
“I have to make sure I
don’t get exhausted,
and I’m subject to
infection, so I’ve got
to make sure I don’t
get staph. I could
never have a fighting
— Melanson on Behcet’s disease.
“I love training Randy,” Melanson says. “I have a lot of fun training him and working out with him. There are some fighters there that I really like working out with. I was a good grappler before I got here, but when you’re constantly going against other good grapplers and other good fighters, your game changes and adapts. I really feel like I’ve gotten so much better technically.”
The move to Xtreme Couture forced Melanson to expand his horizons in teaching and coaching the martial arts.
“I’ve learned how to coach different personalities, so it’s a great learning experience,” he says. “We get people from all over the world to come here. I hate Vegas, but I love the gym. Every year I feel like I’m getting so much better, as a coach, as a grappler. You can’t get that many places.”
Hurdles in a gym of that size are many.
“It’s not easy, though, learning the program at a gym like this because there are a lot of tough guys who always want to challenge you,” Melanson says. “You deal with a lot of egos and a lot of attitude, but if you have a personality like me, you love challenges. I wouldn’t want to go anywhere else.”