Public Release: 

Delay in diagnosis for AS patients can lead to permanent spinal damage

Disease strikes people in the prime of life

The Spondylitis Association of America

SHERMAN OAKS, Calif. - Oct. 22, 2002 - Although a majority (61%) of respondents with ankylosing spondylitis (AS) experience symptoms of AS by age 29, most have a delayed diagnosis, with many seeing multiple doctors in the process, according to a national survey of more than 2,000 AS patients commissioned by the Spondylitis Association of America (SAA).

Commonly referred to as arthritis of the spine or AS, ankylosing spondylitis is a painful disease that typically strikes people in their 20s. As the disease progresses, the spine can gradually fuse (become rigid), making it difficult or impossible to move the neck and spine. Two out of three survey respondents (66%) said AS has forced them into a forward-stooped posture and more than half (55%) said their spine has fused at least partially.

"I have had my hip replaced and my neck is almost completely fused, making it impossible to do many of the simple things most people take for granted such as pick up my daughter," said Tish Pollack, 42. "I worry that my daughter has inherited AS from me, and I hope more treatments and even a cure can be found within my lifetime."

Approximately 60 percent of respondents said having the disease limits their ability to walk, get into a car, sleep and/or have a satisfying sex life. One in four (25%) said they have been forced to change their job or career because of AS.

"For the almost one million people who suffer from ankylosing spondylitis, it is a common, yet often unrecognized disease," said Jane Bruckel executive director and founder of the Spondylitis Association of America (SAA). "According to our survey, the majority of people didn't know what they had until they reached a specialist. Our survey also shows AS is dramatically affecting people's lives and clearly indicates much more needs to be done in the areas of diagnosis, treatment and research."

Other survey findings include the following:

  • More than half (54%) were not diagnosed with AS until at least five years after their symptoms first appeared; three out of ten (30%) endured symptoms for more than ten years before they were diagnosed.
  • Almost one quarter (24%) of those surveyed saw five or more health professionals in pursuit of a diagnosis.
  • Three out of ten (29%) said that when their AS pain was at its worst, they were incapacitated and could not move.

There is hope for people with AS "When ankylosing spondylitis is diagnosed, proper medical management can help minimize back pain and stiffness. Also, emerging data on new therapies under development appears to indicate that permanent damage, disability and deformity might also be prevented in the future," said Michael Weisman, M.D., chief of rheumatology at Cedars-Sinai Medical Center and professor of medicine at UCLA. "That's why it is so important for people who have symptoms of AS to understand the early warning signs and seek diagnosis."

Early warning signs of AS include:

  • gradual onset of lower back pain before age 35;
  • early-morning stiffness of the spine;
  • pain and stiffness that worsen with immobility;
  • pain and stiffness that improve with physical activity; and
  • symptoms that persist longer than three months.

Current treatment consists of stretching and strengthening exercises, deep breathing, attention to posture and medications to combat the symptoms of pain and stiffness.

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About the survey
The AS Life Impact survey was conducted by Harris Interactive®, best known for The Harris Poll®. Harris surveyed 2,190 adults who identified themselves as having AS. These results were validated by a second sample group of 194 people with AS who were physician-referred. The study was conducted from July 3 through October 4, 2002. The AS Life Impact survey was funded by grants from Amgen and Wyeth Pharmaceuticals, and Centocor, Inc. The SAA was solely responsible for all content and development.

About the Spondylitis Association of America
The Spondylitis Association of America (SAA) is committed to empowering patients to live life to its fullest potential and finding a cure for AS and related diseases. The SAA is the largest resource in the United States for people seeking information on the disease. The SAA has spearheaded a North American research project involving ten university medical centers and the National Institutes of Health to find the genetic cause of the disease. For more information, visit www.spondylitis.org or call toll-free 800-777-8189.

Note to editors:
This weekend, on October 25-29, new genetic findings about ankylosing spondylitis will be presented at the American College of Rheumatology annual scientific meeting in New Orleans.

Next week, on October 30 and 31, the SAA is hosting a Food and Drug Administration (FDA) Guidance Development meeting in Bethesda, Md. This is the first time a patient advocacy group has hosted such a meeting. The two-day conference will include experts from the FDA, National Institutes of Health, pharmaceutical companies and clinical investigators. The goal of the meeting is to speed up AS treatment advancements and approvals.

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