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First, national life impact study of ankylosing spondylitis identifies need for parent, physician awareness

When kids or teens experience aching joints and stiffness it may be more than growing pains. It may be arthritis of the spine and other joints (ankylosing spondylitis), which researchers report can often go undiagnosed for years and years, leading to serious problems in adulthood. The findings, generated from a national life impact study and reported in the June 15 issue of Arthritis Care and Research, highlight a need for increased awareness and earlier treatment of the disease.

"Many children can have arthritis of the spine for years, but it can go overlooked and untreated," said Robert Warren, M.D., one of the publication authors, chief of rheumatology services at Texas Children's Hospital and associate professor of pediatrics at Baylor College of Medicine. ""We need to diagnose their illnesses early and provide appropriate medications and other therapy. With early diagnosis and proper treatment, a 13-year-old--who may otherwise go undiagnosed--can experience significant relief of symptoms and potentially minimize or avoid disease-related disability later in life."

The life impact study was commissioned by the Spondylitis Association of America and involved more than 2,000 ankylosing spondylitis (AS) patients. Results were collected from a mail survey distributed in 2002, which gathered a range of information including analysis of work-related disability, functional impairment, self-reported quality of life and spinal involvement. Results from the study were analyzed by a team of researchers led by Dr. Millicent Stone, University of Toronto. In addition to a delay in diagnosis, the researchers report that adults with childhood onset disease experience more serious physical deformity and work-related disability than those who develop the disease as adults.

"By surveying individuals with AS, we have learned that many people visit multiple doctors before receiving a diagnosis and that adults with childhood onset disease experience much greater impairment during later life," said Jane Bruckel, executive director and founder of the Spondylitis Association of America. "Arthritis of the spine strikes people very young in life and is more prevalent than multiple sclerosis, cystic fibrosis and Lou Gehrig's disease combined. With new, effective medical options available for AS, early diagnosis and proper medical care can have a significant impact on managing this disease."

While back pain is the primary symptom of AS in adults, children often experience other symptoms of the disease. Common symptoms of juvenile onset AS can include:

Ongoing or recurrent joint pain, including neck or back pain Pain around knees, bottom of feet and ankles Pain and stiffness that is usually worse in the morning Pain and stiffness that improves with exercise and worsens with immobility

Swelling in the joints or other areas of the body, including where ligaments like the Achilles tendon attaches to the bone. "It is common for children to experience 'growing pains,' but symptoms of joint aches and pains that last for weeks are unusual," said Warren. "Parents who notice these symptoms in children should speak with their physician and determine if they should see a pediatric rheumatologist. With early diagnosis and proper treatment, children with AS can experience significant relief of symptoms and potentially impact the long-term effects of this disease."

About Ankylosing Spondylitis

Ankylosing Spondylitis (AS) is a painful and progressive form of spinal arthritis that typically develops in the late teens and early twenties. It can result in fusing of the spine, hips and other joints, resulting in decreased mobility and, in severe cases, a forward-stooped posture. AS can also affect the eyes, heart, lungs, kidneys and bowel. The Spondylitis Association of America estimates that at least 500,000 people in the U.S. suffer from AS, but likely far more because the disease is under recognized.

About the Spondylitis Association of America

The Spondylitis Association of America was the first, and remains the largest, resource in the U.S. for people affected by spondylitis. For more than 20 years, the SAA has dedicated all of its resources to funding programs and research that directly benefit the AS community. The SAA is a driving force in national research efforts to find the cure. For more information on AS and the SAA, visit www.spondylitis.org or call 800-777-8189.

About Texas Children's Hospital

Established in 1954 and located in the heart of the Texas Medical Center in Houston, Texas Children's Hospital is the largest pediatric hospital in the nation. Out of 162 pediatric rheumatologists in practice across the country, Texas Children's employs five in the subspecialty.