Why Diagnosing Ankylosing Spondylitis Is Often Difficult or Delayed

Ankylosing spondylitis is commonly referred to as arthritis of the spine. Typically, the painful form of arthritis strikes people, mostly men, in their 20s. Most ankylosing spondylitis patients see multiple doctors in search of a correct diagnosis. Over one million people suffer from ankylosing spondylitis, yet it can often go undiagnosed or be misdiagnosed until the patient reaches a specialist.

As ankylosing spondylitis progresses, the spine can become rigid or fused, making it impossible to move the neck and spine.

Ankylosing Spondylitis Life Impact Survey

The AS (Ankylosing Spondylitis) Life Impact Survey was conducted by Harris Interactive on behalf of the SAA (Spondylitis Association of America). With a goal of learning more about people with ankylosing spondylitis and how the disease impacts their daily lives, Harris surveyed 1,996 adults by mail and 194 online between July 3 and October 4, 2002. The survey respondents claimed they had ankylosing spondylitis and had some contact with the SAA. A second sample group of 194 patients with ankylosing spondylitis were physician-referred.

Survey Results

Results from the Ankylosing Spondylitis Life Impact Survey show how difficult daily living can be for ankylosing spondylitis patients:

  • 66% of respondents said ankylosing spondylitis caused them to have forward-stooped posture.
  • 55% reported that their spine had fused, at least partially.
  • 60% of respondents said ankylosing spondylitis limits their ability to walk, get into a car, sleep, and/or have a satisfying sex life.
  • 25% have been forced to change their job/career because of ankylosing spondylitis.
  • 44% avoid certain jobs/careers due to ankylosing spondylitis, while 17% under age 65 said they are “not working”.
    • 54% were not diagnosed with ankylosing spondylitis until at least 5 years after the first symptoms appeared.
    • 30% endured symptoms for more than 10 years before being diagnosed with ankylosing spondylitis.
    • 24% saw 5 or more health professionals as they sought a diagnosis.
    • 62% said they were diagnosed by a rheumatologist.
    • 71% claimed that back pain/stiffness was one of the symptoms causing them to seek treatment at first.
    • 29% reported that when ankylosing spondylitis pain was at its worst, they were unable to move and were incapacitated.
    • 51% reported that their breathing has been painful or difficult at some point due to ankylosing spondylitis.

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