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Stepping out: Rheumatoid arthritis stole his mobility; doctors and new technology gave it back

 

Rheumatoid arthritis sufferer Craig Cain has his shoulder stretched by physical therapist Sara Siler after his most recent of several surgeries in the last three and a half years. In addition to the shoulder surgery, he’s had his toes reconstructed and had operations to replace both knees.

Now that he can walk, Craig Cain just wants to dance.

He danced on New Year’s Eve, testing his reconstructed toes and two knee replacements by climbing stairs in Beale Street establishments that would’ve been impassable only months before.

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Photo by Karen Pulfer Focht

Cain has spent most of his life bound to a wheelchair, but he recently began walking after having both of his knees replaced.

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Photo by Karen Pulfer Focht

Regina Edwards moved her son, Craig Cain, to Memphis in 1995 because he needed special medical attention for his rheumatoid arthritis.

He danced at other clubs across Memphis, gradually building the confidence to try some tentative steps and meet people.

He dances so much nowadays that his mother, Regina Edwards, softly chuckles at how her son — after a childhood of disability, social isolation and almost constant, excruciating pain — sometimes doesn’t get home until 2 or 3 in the morning.

After all, at age 22, Cain is making up for lost time.

“I feel like a new person,” he says, “like I’ve got my life back.”

It wasn’t long ago that Cain’s body was like a creaky old machine, breaking down one part at a time. First his toes balled up and froze in a bent position, then his knees failed and finally a hip and later a shoulder went out.

By the time he was a teenager, Cain was wheelchair-bound and unable to raise his arms.

The source of his trouble was an unusually aggressive and severe form of juvenile rheumatoid arthritis — the worst case any of his doctors had ever seen. It had been coursing through his body since early childhood, attacking and destroying one joint after another.

“They (doctors) kept asking me, ‘Is there anyone else in my family with it?'” said his mother. “No, he just popped up with it.”

But now, the Hickory Hill resident is not only walking and dancing, but pursuing dreams of becoming a chef. He’s living more of a normal life, thanks to a series of unusually complex surgeries.

During the past three and a half years, Cain has had his toes reconstructed and undergone operations to replace both knees, his right hip and, just last month, his right shoulder.

“We’re hoping this is our last surgery,” said Edwards.

The disease plaguing Cain is usually associated with middle or old age. But arthritis also is a pervasive childhood affliction that currently affects some 294,000 American kids under age 18, according to the Arthritis Foundation.

Rheumatoid arthritis, characterized by the inflammation of the lining of the joints, is one of the more common forms of juvenile arthritis. With no known cause or cure, it’s an auto-immune disease that sometimes causes only mild problems, but often wreaks painful, life-changing damage by destroying joints and organs.

“Craig is truly a severe case,” said Dr. Tim Krahn, an orthopedic surgeon with OrthoMemphis who operated on him.

“You don’t normally see 21-22-year-old kids coming in with all their joints worn out.”

Cain’s journey, Krahn says, “is an amazing story.”

It’s one that can be traced to a small town outside Richmond, Va., where Cain and his family lived when he was a small child.

“Up until age 5, we had no problems,” his mother said.

Cain has two older brothers who don’t suffer from arthritis and are in good health. The first sign of his trouble was a rash on his knees, wrist and back. Then came the pain: lacerating jabs that could leave him screaming and crying at night.

A chronic fever made the ailment all the more mysterious.

For Edwards, the symptoms evoked fears that her son had multiple sclerosis, a disease that had killed her mother. But even after rheumatoid arthritis was identified as the ailment, doctors were flummoxed as to how to treat it.

“It seemed like anything that was supposed to work, it wasn’t working for him,” she said.

Casting around for solutions, doctors at a Richmond hospital planned to inject Cain with gold salts — a well-established treatment that can reduce inflammation. But Edwards, a licensed practical nurse, researched the injections and vetoed them on the grounds that he was too young.

Dissatisfied with the treatment her son was receiving, she looked for a longer-term solution.

“I asked the doctor, ‘Is there somewhere else where we could go for better medical treatment?'”

There was, came the answer. And the place? Memphis.

It was the reputation of the rheumatology specialists associated with Le Bonheur Childr en’s Medical Center that prompted the Virginia doctors to refer Edwards to Memphis. She moved here with her sons in 1995.

Instead of the injections, doctors in Memphis tried gold pills. They worked for a while, Edwards said, but the disease continued to progress to the point that Social Security approved Craig’s disabled status.

After years of walking with splints and braces, and undergoing painful physical therapy, he was limited to a wheelchair. The affliction had stolen any chance for a normal childhood.

“I couldn’t go play sports, go out and have fun,” he recalls. “I would basically sit in the house.”

As the pain in Cain’s knees and other joints grew worse, side effects of the disease took hold. Fluid build-up around his heart and lungs prompted a stay at St. Francis Hospital.

“He’s had so many complications from that arthritis,” Edwards said.

Cain’s life soon revolved around a regimen of injections, pills and skin patches that delivered doses of everything from pain-killers to steriods. The treatments often made him nauseous, sleepy or depressed.

His graduation from Ridgeway High School in 2005 was a major achievement, but it also created a huge void in his life. Cain’s friends were moving on, but, unable to get out and function, he was left behind.

“It was very depressing,” he recalls. “I felt like I was in prison.”

In an effort to cheer him up, Cain’s mother bought him a dog, a Boston terrier, and arranged for him to get counseling.

But after nearly 15 years of dealing with the ravages of the disease, Cain was ready for a long-term solution. In subsequent visits to doctors, X-rays showed a total absence of cartilage in his knees — just bone grinding on bone.

The operations to replace the knees would be anything but ordinary, however. The disease had been so severe that Cain’s bone structure didn’t develop normally, Krahn said.

“In Craig’s case, the anatomy was very distorted.”

But a new pre-operative navigation system developed by nearby Wright Medical Group provides doctors customized “cutting guides” based on CT or MRI scans. It helps ensure the implants are aligned correctly.

With his surgeries over — assuming other joints won’t need replacing — Cain is now getting ready to learn how to drive. Then he wants to attend culinary school to learn to be a chef.

His mother, meantime, is enjoying freedom, too, now that she doesn’t have to constantly care for Cain and take him to doctors. When reached by phone earlier this month, she was in Florida.

“I finally can go away and know that he’s OK,” Edwards says.

Cain still needs physical therapy, but he speaks like someone who has undergone a rebirth.

“That’s what it feels like — a second chance,” he says.

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