Why Diagnosing Ankylosing Spondylitis Is Often Difficult or Delayed

Survey Highlights Problems Associated With Ankylosing Spondylitis

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Ankylosing spondylitis (AS) 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.


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 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, 2002 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 survey showed how difficult daily living can be for ankylosing spondylitis patients:

  • 66 percent of respondents said ankylosing spondylitis caused them to have forward-stooped posture.
  • 55 percent reported that their spine had fused, at least partially.
  • 60 percent of respondents said ankylosing spondylitis 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 ankylosing spondylitis.
  • 44 percent avoided certain jobs/careers due to ankylosing spondylitis, while 17 percent under age 65 said they were "not working."
  • 54 percent were not diagnosed with ankylosing spondylitis until at least five years after their first symptoms appeared.
  • 30 percent endured symptoms for more than 10 years before being diagnosed with ankylosing spondylitis.
  • 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 ankylosing spondylitis 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 ankylosing spondylitis.

Ankylosing Spondylitis Symptoms

It is imperative that people with symptoms of ankylosing spondylitis 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 ankylosing spondylitis. The early warning signs of ankylosing spondylitis 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 which 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.