Why Diagnosing Ankylosing Spondylitis Is Often Difficult or Delayed

Survey Highlights Problems Associated With Ankylosing Spondylitis

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Over one million people suffer from ankylosing spondylitis (AS), yet this condition is not easily diagnosed or treated. You might see multiple doctors in search of a diagnosis during your initial evaluation, and you may need long term treatment.

AS is a type of inflammatory arthritis of the spine. Typically, this painful form of arthritis strikes men in their 20s. When AS progresses, the spine can become rigid or fused, making it impossible to move the neck and/or back.


What Is Ankylosing Spondylitis?

Life Impact Survey

The AS Life Impact Survey was conducted by Harris Interactive on behalf of the Spondylitis Association of America (SAA) with the goal of learning more about people with AS and how the disease impacts their daily lives.

Harris surveyed 1,996 adults by mail and 194 online between July 3, 2002, and October 4, 2002. The survey respondents had had some contact with the SAA and stated that they had AS. The second sample group of 194 patients was physician-referred.

Survey Results

Results from the survey showed how difficult daily living can be for with AS:

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

Ankylosing Spondylitis Symptoms

It is imperative that people with symptoms of AS heed the early warning signs and seek diagnosis and treatment. Back pain and stiffness can be minimized with proper medical management.

New therapies are emerging, which help control disability and deformity associated with AS.

The early warning signs of AS to be aware of are:

  • Gradual onset of low back pain prior to age 35
  • Morning stiffness of the spine
  • Pain and stiffness that worsens with immobility
  • Pain and stiffness that improves with physical activity
  • Symptoms persist for more than three months

Ankylosing Spondylitis Doctor Discussion Guide

Get our printable guide for your next doctor's appointment to help you ask the right questions.

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