Bamboo Spine: Too Late for Dad, Not for Daughter

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Most of the damage to the spine occurs in the first 10 years of the disease, which is why early detection is so important.

Like Haskew, many patients suffer for years, going from doctor to doctor, before they get a proper diagnosis. In 2010, SAA launched a new online screening tool test -- a series of questions that a patient can print out and take to the rheumatologist.

The organization also initiated a massive marketing campaign last summer that included PSAs on a Jumbotron in New York City's Times Square.

An estimated 10,500 people have already taken the test, self-reporting their chronic back pain. No one knows how many have gone on to get a diagnosis, but about 15 percent who see a rheumatologist do have some form of inflammatory back pain, according to Savage – "a sizable number."

Take the ankylosing spondylitis screening test.

In Haskew's case, the spinal sensitivity in his lower back grew worse and he began to experience some lack of movement, which he first noticed when getting into his foreign car.

"I kept bumping my head and blaming it on the Japanese," said Haskew. "The problem was mine."

The pain finally drove him to the family doctor and eventually an orthopedist, who both diagnosed Haskew with osteoarthritis. He later learned that the increasing tenderness was actually his spine fusing.

In 1986, Haskew finally found an eager young internist who referred him to a rheumatologist. "I went to visit him with my X-rays in hand and didn't even go into the examining room," he said. "I sat down on the other side of his desk and held the X-rays to the ceiling light and he said, 'I can tell you exactly what you have.'"

"What a relief to find out what it was," said Haskew. Doctors could nothing for the fusion, but he can do just about anything that doesn't require flexibility.

The gold standard for diagnosing AS is looking for changes in the sacroiliac joint, near the buttock area of the spine. But often they do not show up on X-rays for years and deter some doctors from making the correct diagnosis.

Unlike other types of arthritis, a blood test does is negative for the rheumatoid factor, another reason spondylitis is difficult to diagnose.

Disabling Spondylitis May Begin in Bowel

Some researchers speculate that the disease begins with an intestinal infection that damages the bowel and allows bacteria to circulate in the bloodstream. The body's reaction can cause an autoimmune response.

As with the Haskews, AS tends to run in families. About 90 percent with the disease test positive for the gene HLA-B27. Now researchers have found about 12 more genetic markers that may explain its varied progression.

"It's not that hard a problem to diagnose, it's the recognition of it," said Dr. John Reveille, director of the division of rheumatology at The University of Texas Health Science Center at Houston and a leading researcher in the field. "Low back pain is the leading cause of disability in the U.S. and the most days lost from work."

"Early diagnosis is important, so you can get the patient on a treatment regimen and control the symptoms…and alter the progress of the disease," he said.

Preliminary data in some of his studies have shown that there are certain genes associated with rapid progression of the disease and a test might ultimately be developed to see early predictors.

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