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Support and Resources for People with Ankylosing Spondylitis (AS)

Patient Advocate Speaks Out On AS

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Updated July 28, 2011

Written or reviewed by a board-certified physician. See About.com's Medical Review Board.

According to Kelly Johnston, patient advocate for people with ankylosing spondylitis, AS is a "horrible disease" that does not have a happy ending. Johnston was diagnosed in 2009, but not before she spent three years searching for a a physician who would take her symptoms seriously, recognize them and tell her what was going on.

AS is a form of chronic inflammatory arthritis in which the spine fuses over time. The disease generally begins at the sacrum and, to varying degrees, progresses to other joints. As a result of this fusion process the bones tend to become brittle. A person with AS is at a much greater risk for serious problems in the event of impact, trauma or injury. Pain is pretty much constant, Johnston says.

Due to severe stiffness and pain, even the smallest of tasks, such as getting out of bed each morning, can present a major challenge to a person with ankylosing spondylitis. For many people with AS, pain medications are vital for daily functioning. Unfortunately, it is not uncommon for healthcare providers to view their AS patients as "drug seeking" when they speak up and ask for what they need, says Johnston.

"Daily reliance on pain medication to get going often strains family relationships. There’s a lot of stigma around needing pain meds to survive," Kelly informs me. "Many of my peers with AS find their family members just do not understand AS, nor how much pain it causes."

AS takes its toll in other ways, too - from related conditions such as Crohn's disease to medication side effects that sometimes result in damage to internal organs.

Along with those issues, Johnston reveals that many health providers don’t even know what ankylosing spondylitis is. She recounted her experience in the ER where she passed a kidney stone. "The nurses and doctor were unfamiliar with ankylosing spondylitis, so they didn’t believe me when I told them I was in excruciating pain." Consequently, she says, "I was treated like a drug addict off the street."

Johnston says this lack of information on the part of health providers can be hazardous to the patient. This is because people with AS are very vulnerable to injury, misdiagnosis and conditions related to the disease.

Your doctor can confirm that you have AS by seeing evidence of the inflammation (that causes the sacroiliac joints to fuse) with bone imaging studies. It can take up to 10 years after the onset of symptoms for evidence of AS to show up on a regular x-ray film (which is what happened to Kelly), so doctors are turning more and more to MRI, which can confirm AS much earlier.

According to Kelly, primary care doctors need to be able to recognize the symptoms of AS. They should "think" AS as a possible diagnosis when a patient comes into their office:

  • having had low back pain for at least three months
  • with joint stiffness
  • with normal blood work that does not reveal other causes of arthritis.
Kelly feels strongly that family physicians should know to refer their patients with these symptoms to a rheumatologist.

If your doctor has diagnosed you with ankylosing spondylitis, check out Kelly’s Facebook Group, which is called Ankylosing Spondylitis Awareness Project (ASAP). It's more than 3,500 people strong, and members help each other when things get dark. Kelly started ASAP for people who feel as though they have no one to turn to for understanding, support and ideas for managing this difficult spinal disease.

Source:

Spondylitis Association of America. Complications: How is a Person Affected? http://www.spondylitis.org/about/complications.aspx

Johnston, K. Telephone Interview. July 12, 2011.

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