STORY BYScott Bilinski was only 15 when he was diagnosed with ankylosing spondylitis, a form of arthritis that attacks the spine and also can target other joints and organs in the body.
It seemed as if his symptoms occurred overnight. Once active in hockey, tennis and basketball, now he couldn’t even get out of bed.
“I went from no symptoms at all to not being able to walk,” recalls Bilinski, now a 21-year-old electrical and computer engineering student at Baylor University.
John Reveille, M.D., professor of internal medicine and head of rheumatology at The University of Texas Medical School at Houston, says ankylosing spondylitis (AS) is an insidious disease that usually strikes when patients are in their teens, 20s or 30s. Symptoms of inflamed, aching joints come on strong and quickly.
The disease eventually causes the spine to completely fuse so the patient is unable to straighten and bend, says Reveille, a leading expert on AS.
Like Pope John Paul II, many AS patients develop a curvature of the spine that forces them into a stooped position, with their head hanging lower than their shoulders.
If AS strikes at an early age while the patient is still growing, joints in the foot may also fuse together.
An estimated 40 percent of AS patients require a hip replacement. Bilinski already has undergone one hip replacement, and his orthopedic surgeon says he’ll likely need to have the other hip replaced in a few years.
This form of arthritis, which is more prevalent than multiple sclerosis, cystic fibrosis and Lou Gehrig’s Disease combined, can even affect the eyes, heart and lungs.
Men are more than twice as likely as women to have AS, with one in every 500 being diagnosed with the disease.
Doctors do not yet know what causes AS, but Reveille, the principal investigator of the North American Spondylitis Consortium, says there is a significant genetic component. “We know that 97 percent of cases of AS is heredity,” he says.
Reveille and his colleagues are studying the genetics of the disease and also testing medications that may help better manage symptoms and progression of AS.
Bilinski says the most important thing patients can do if they suspect they have AS is to find a physician who is experienced in treating this form of arthritis.
Reveille says AS is often misdiagnosed in its early stages because the persistent back pain is often mistaken for an old injury. X-rays and a simple blood test can aid in the diagnosis.
“While there is no cure, early diagnosis and proper medical management can minimize back pain and stiffness and help reduce the risk of disability and deformity,” Reveille says.
Getting rid of the pillow and sleeping flat on the mattress are among the first instructions Reveille gives his AS patients. This helps keep the back straight. He also recommends exercises, such as swimming, that extend the spine.
Non-steroidal inflammatory drugs, including Enbrel, Humira and Remicade, can be injected or infused to reduce joint inflammation and stiffness. Reveille adds that there is promising, preliminary data that shows that Enbrel and other anti-tumor necrosis factor-alpha therapies (TNF blockers) may prevent spinal fusion all together.
Reveille says it is crucial that patients with AS and their families participate in research so scientists can better understand the disease, develop more effective treatments and find a cure.
“Once we find all the genes that cause AS and understand the disease process, we can really go to the treatments that can turn this disease off so we can stop the spine from fusing, stop eyes from becoming inflamed and stop joints from being destroyed,” Reveille says.
“With this research, we can ultimately get this disease under control, possibly curing it from the very onset.”
For more information, visit www.spondylitis.org.
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Dr. John D. Reveille is a professor in and director of the Division of Rheumatology at UT Medical School.
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