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Delay in Diagnosis for People with Ankylosing Spondylitis Can Lead to Permanent Spinal Damage and Poor Quality of Life

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    Delay in Diagnosis for People with Ankylosing Spondylitis Can Lead to Permanent Spinal Damage and Poor Quality of Life

    Delay in Diagnosis for People with Ankylosing Spondylitis Can Lead to Permanent Spinal Damage and Poor Quality of Life


    Disease Strikes 1 Million Americans in the Prime of Life

    SHERMAN OAKS, Calif., Oct. 22 /PRNewswire/ -- 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.

    About the survey

    The AS Life Impact survey was conducted by Harris Interactive(R), best known for The Harris Poll(R). 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.

    AS Life Impact Survey

    Quick-Facts

    The AS Life Impact survey was conducted by Harris Interactive(R) (known for The Harris Poll(R)) on behalf of the Spondylitis Association of America (SAA).

    Key findings

    AS is hard to diagnose, often taking up to 10 years from the time a patient first experiences symptoms to the time the patient receives proper diagnosis.

    -- Six out of ten (61%) said they began experiencing symptoms by age 29.

    -- 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.

    -- Six out of ten (62%) said they were diagnosed by age 39.

    -- One in four (24%) saw five or more health professionals in pursuit of a

    diagnosis.

    -- Six out of ten (62%) said a rheumatologist diagnosed them.

    AS causes permanent physical damage.

    -- Two out of three (66%) said AS has forced them into a forward-stooped

    posture to at least some degree.

    -- More than half (55%) said their spine has fused (become rigid) at least

    partially.

    AS is a painful disease.

    -- Seven out of ten (71%) of those surveyed said that back pain or

    stiffness was one of the symptoms that first caused them to seek

    treatment.

    -- Three out of ten (29%) say that when their AS pain was at its worst,

    they were incapacitated and could not move.

    -- Half (51%) said at some point their breathing has been painful or

    difficult as a result of AS.

    AS causes people to change jobs or stop working.

    -- More than four in ten (44%) said they have had to avoid certain careers

    or jobs because of AS.

    -- One in four (25%) said they have had to change their career or job

    because of AS.

    -- One out of six (17%) with AS under age 65 describe themselves as "not

    working." Of those, more than six out of ten say AS is the reason they

    are not working.

    -- One out of eleven (9%) does not work at all because of AS.

    AS greatly affects patients' daily lives.

    -- Six out of ten (or more) said having AS is at least somewhat limiting

    with regard to getting into a car (70%), walking (64%) and having a

    satisfying sex life (58%).

    -- Eight out of ten (82%) said having AS is at least somewhat limiting

    with regard to getting a good night's sleep.

    Patients try a variety of treatments to help them cope with AS.

    -- More than eight out of ten (83%) had taken prescription medication in

    the past year to manage their AS.

    -- Almost half (48%) had taken over-the-counter medication in the past

    year to manage their AS.

    -- Six out of ten (62%) had done yoga, swimming, walking or other sports

    in the past year to manage their AS.

    -- Six out of ten (59%) said a rheumatologist is the type of physician

    primarily in charge of treating their AS.

    Survey information

    -- The AS Life Impact survey was conducted by Harris Interactive(R) (known

    for The Harris Poll(R)) on behalf of the Spondylitis Association of

    America (SAA) to learn more about the experiences of people with

    ankylosing spondylitis (AS) and the impact of the disease on their

    daily lives.

    -- Harris surveyed 2,190 adults (1,996 by mail and 194 online) from July 3

    through October 4, 2002 who identified themselves as having AS and who

    have had some degree of contact with the SAA. These results were

    validated by a second sample group of 194 patients who were

    physician-referred and had AS.

    -- 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.
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