Spondylitis Association of America: North Dakota Doctors’ Offices Flooded with Postcards

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Doctors throughout North Dakota will be receiving dozens of postcards this May 6.

These postcards will be sent by members of the Northern Great Plains ankylosing spondylitis (AS) support group in honor of World AS Day. When group members got the impression that nobody new was being referred to join, group leader Bonnie Smith turned to the Spondylitis Association of America (SAA) for help reaching out to rheumatologists, the specialists who treat AS. According to Smith, “Though we have left information at rheumatologists' offices, and members have personally asked their rheumatologists to recommend our group, we have seen little increase in members or visitors.”

SAA was concerned that this might indicate doctors in the area are not diagnosing new cases of AS, and early diagnosis of the disease is a major priority for the organization. As SAA’s Executive Director Laurie Savage says, “Because most of the damage caused by spondylitis occurs in the first 10 years, early diagnosis means early treatment to improve quality of life.”

This is a major challenge because the average time from onset of symptoms to diagnosis can be as long as 10 years, the same critical period that the most damage is done. Smith says, “I ignored the symptoms for years, living on Advil and Excedrin… Finally, when I could stand the back pain no more, my primary care physician ordered a full back x-ray… Because my sacroiliac joints are completely fused and problems exist in the cervical and thoracic areas as well as in the lumbar region, I must have had it for decades.”

SAA and Smith needed a novel way to reach rheumatologists, who regularly receive traditional literature and brochures about diseases. That is how the idea of patients sending handwritten notes on AS educational postcards that read “Think Spondylitis” on front was born. SAA’s Programs Director, Elin Aslanyan says, “We know that our support group members have been able to find some great doctors, but we want to be certain that all rheumatologists in North Dakota are thinking of spondylitis.”

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Elin Aslanyan

Diann Peterson
@spondylitis
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