Enlarge By Karie Hamilton for USA TODAY Stephanie Papke, 33, reveals a scar on her left arm from a surgery for a very rare and mysterious bone disease called melorheostosis. Griffin O'Neal Handout AN INSIDE LOOK AT 'MELO' AN INSIDE LOOK AT 'MELO' Enlarge An X-ray of a patient who has melorheostosis shows bone growth in the affected leg.



The shortened name for the disease may sound like "mellow," but it's anything but. Melorheostosis, or melo, leads new bone to grow irregularly on top of old bone. Sometimes there's no pain. Sometimes the pain is excruciating and can get worse over time. The new growth on the outside, or cortical, part of the bone can be extremely hard, and surgery is not always an option. Information is available from the Melorheostosis Association, an all-volunteer organization of patients and parents of patients that works to find the cause, treatments and a cure. YOU CLICKED: WEEK'S MOST POPULAR HEALTH STORIES YOU CLICKED: WEEK'S MOST POPULAR HEALTH STORIES 1: Feds rate U.S. nursing homes 2: Doctors detail first U.S. face transplant 3: Surgeon finds foot in newborn's brain tumor 4: Nursing homes talk new ratings 5: Colonoscopy prep pills carry kidney risk 6: Duggars welcome 18th child No. 7-10: Diabetes drug risks, placebo effect Griffin O'Neal remembers the day his mother walked in on him while he was playing with his plastic motorcycle: He was jumping it off a large bump that had grown on his left shin. Just 6 years old, O'Neal thought the bump was a result of the swift kicks a girl he had a crush on was doling out. His mother, Joanna Cook Moore, thought otherwise. "My mother looked down and said, 'Well what, Lord Jesus, is that?' " recalls O'Neal, the 43-year-old son of actor Ryan O'Neal and brother of Tatum O'Neal. BETTER LIFE: News for healthy living That bump turned out to be the outward signs of a rare and mysterious bone disease called melorheostosis, often referred to by doctors, researchers and patients familiar with it simply as "melo." O'Neal had the bump surgically shaved, but it grew back quickly. As a child, he didn't think much about it. "I just kind of felt like I was deformed — like I was a genetic misfire of some sort because no one else had it in my family. I was the guy with the freaky leg — with the Elephant Man leg." But over the years the condition has gotten worse. Much worse. Today it causes so much pain that when he makes the wrong move, "I'm on the ground and crying like a little girl," O'Neal says. "And that's sad to see a 43-year-old man on the ground." The pain has been so debilitating that O'Neal is on disability from his job making custom guitars because he can't stand. He has even considered having his leg amputated, but he recently learned that the surgery probably wouldn't help — and it could actually make things worse. At this point he's not quite sure what he'll do. But "I'm scared to death," he says. "What's next? I have no idea." When it comes to melorheostosis — which afflicts just one in 1 million people — there are more questions than answers. What doctors do know is what melorheostosis does: It causes new bone to grow irregularly on top of normal bones. On X-rays, bones afflicted with melorheostosis often resemble dripping candle wax. The new growth is often extremely hard — hard enough to actually break surgical equipment — and erratic. It can range from fairly benign — some patients don't even know they have it until an X-ray reveals it — to excruciatingly painful and disfiguring when the bone grows into soft tissue and other bones. It often affects just one bone in the limbs. But sometimes it spreads. And sometimes, it can get worse over the course of a patient's life, as with O'Neal. That's also what happened with Stephanie Papke, a business owner in Tacoma, Wash. Papke was a college volleyball player when she noticed a strange lump on her arm. The trainers figured it was a calcium deposit. She simply put a pad over it. But after college, the bump grew and began "infringing on my nerves and the function of my arm." Papke, 33, had it biopsied and was diagnosed. She tried an operation that doctors thought might help. They cut her from elbow to wrist and shaved the bone. "It was almost as hard as diamonds," she says. The bone "grew back immediately." And then it became "much more painful. I will not have another surgery, even if they say it will make it better, because it's so painful. " It's frustrating for doctors and researchers as well. "It's such a weird, unusual condition," says Mary O'Connor, an orthopedic oncologist with the Mayo Clinic in Jacksonville. "The spectrum of symptoms and how patients present is very broad." Doctors believe the disease is most likely genetically based and can be influenced by environmental factors, says Jill Helms, a researcher and associate professor in the department of surgery at Stanford University. But they don't know for sure. Papke, for instance, has an identical twin sister who does not have the disease. "That's the frustrating part," Helms says. And because the disease is so rare, it is often misdiagnosed, says Kathleen Harper, president of the Melorheostosis Association, which she founded eight years ago in hopes of finding others with the condition. When Harper began the organization, "I had never met another melo patient in my life." So Harper, an attorney, started a website, melorheostosis.com. Today, she knows of 400 patients worldwide. And this month, the all-volunteer association will hold its fifth annual international convention in Washington, D.C. Recently she met with O'Neal, who has had his own share of difficulties in life. Those include a turbulent relationship with his father and battles with drugs and alcohol. And he was found guilty of reckless boating in an accident in 1986 that killed Francis Ford Coppola's son, Gian-Carlo Coppola. Today, O'Neal says, he has been sober for two years. "Now that I've met the people who are leading the charge on this disease, I'm right there with them," O'Neal says. "I'm going to help out as much as I possibly can, because I don't want anyone else to feel what I feel." Guidelines: You share in the USA TODAY community, so please keep your comments smart and civil. Don't attack other readers personally, and keep your language decent. Use the "Report Abuse" button to make a difference. You share in the USA TODAY community, so please keep your comments smart and civil. Don't attack other readers personally, and keep your language decent. Use the "Report Abuse" button to make a difference. 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