Advocacy - Key Messages

AS (ankylosing spondylitis) is arthritis of the spine that strikes young people. The typical age of onset is between 17 and 35.
Difficult to diagnose in the early stages, it is the most overlooked cause of persistent back pain in young adults.
AS can also damage other joints such as the hips and shoulders, as well as other areas of the body including the eyes, heart and lungs.
AS causes pain and spinal stiffness, and, in severe cases, the spine fuses solidly in a forward-stooped posture.
As one form of arthritis, it costs the U.S. economy billions of dollars in costs of care and productivity loss.

The Centers for Disease Control and Prevention for the National Arthritis Data Workgroup estimates that ankylosing spondylitis and its related diseases affect as many as 2.4 million people in the United States. It should be noted that rheumatoid arthritis only affects 1.3 million adults, down from the previous estimate of 2.1 million.
Ankyosing spondylitis is not a rare disease.
AS is more prevalent than multiple sclerosis, cystic fibrosis and Lou Gehrig's disease combined.

The AS Life Impact Survey conducted by the Spondylitis Association of America (SAA), uncovered several key findings on the impact of spondylitis.

AS is difficult 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.