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Alicia’s Story: Undiagnosed Ankylosing Spondylitis
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When professional dancer Alicia Graf Mack first started complaining about joint pain, her doctors were convinced it was the result of the then-teen’s grueling schedule — hours of training every day for years to make it in the very competitive world of dance. Now age 35 and a lead dancer with the Alvin Ailey American Dance Theater in New York City, Mack spent most of her teen years practicing while her peers were off socializing. “The doctors said it was just wear and tear because I was so physically active,” she says. “They kept telling me I was young and healthy when I knew I wasn’t.”
A gifted artist, Mack joined the famous Dance Theatre of Harlem during her senior year in high school. Even as her career started to take off, her condition worsened. “I woke up one day and my knee was really swollen, but I didn’t have a lot of pain,” she says. "That was the beginning of trying to figure out what was wrong.”
“I went through so many doctors and had so many tests, and still no one knew what was going on with me," Mack says. In fact, it took several years before she was correctly diagnosed with ankylosing spondylitis (AS), a form of inflammatory arthritis that primarily affects the spine — although other joints can be involved too, as in Mack’s case. Symptoms of ankylosing spondylitis include pain, stiffness, and fatigue. In severe cases of AS, the spine can become fused into a fixed position, limiting the kind of movement Mack's career depends on.
Diagnosis Delays Are Common With Ankylosing Spondylitis
Mack’s story is fairly typical, in that people with ankylosing spondylitis symptoms often go undiagnosed for years. In fact, research published in the journal Clinical Rheumatology shows that it often takes six years or more to diagnose AS. Symptoms start, but doctors aren’t able to pinpoint the cause of the pain right away. This is at least in part because signs of AS don't show up on X-rays until the condition is more advanced, which could be seven to 10 years after the symptoms start.
However, that may be changing: More recent published in the journal Annals of the Rheumatics Diseases suggests that the diagnostic delay may be declining as awareness of ankylosing spondylitis increases.
For Mack, it was her cousin, a rheumatologist, who finally started putting the pieces together to help diagnose her ankylosing spondylitis. The biggest clue was that she tested positive for the HLA-B27 gene. This gene carries a greater-than-average risk for certain autoimmune disorders, including AS, although the test itself isn't enough to make an ankylosing spondylitis diagnosis.
Living With Ankylosing Spondylitis
Mack’s knee was so unstable due to the effects of ankylosing spondylitis that she underwent two different surgeries. She also had to quit dancing twice because of pain and disability, first in 2000 and then again in 2008 when, at the end of an international tour, her joints were so inflamed that she decided she needed a break from dancing.
Fortunately for dance fans, she returned in 2011 and is doing better than ever. She's slated to perform in the Alvin Ailey classic "Revelations" in a U.S. tour including a stint in New York in December 2014.
For Mack, the back pain that's the hallmark of AS didn’t start until recently, she says. The goal of aggressive ankylosing spondylitis treatment is to keep the condition from progressing and offer pain relief. Since her diagnosis, she's been on various regimens of combination therapy attempting to do just that.
“I still have pain,” she says. “All dancers have pain, but for me it’s scary, because it can affect any joint at any time.”
Signs and Symptoms of Ankylosing Spondylitis
According to the American College of Rheumatology, approximately 80 percent of people across the globe will have back pain at some point in their lives — and that's partly why it's so difficult to diagnose ankylosing spondylitis, says Susan Goodman, MD, a rheumatologist with the Hospital for Special Surgery in New York City and an associate professor of medicine at Weill Cornell Medical College. “Back pain is one of the main reasons people see a doctor, and of those individuals, only a small percentage have inflammation as a cause of the pain," she says. “Ankylosing spondylitis does get missed. The inflammation in spinal joints isn’t always seen on scans, and it takes years of pain and inflammation for damage to be visible on an X-ray. The best thing that can be done is to look at a person’s health history.”
If you’re concerned that you may have AS, Dr. Goodman's advice is to see a doctor if your back pain is worse in the morning, because morning stiffness indicates it could be ankylosing spondylitis. Other causes of back pain get worse as the day goes on. “And back pain from ankylosing spondylitis feels better with exercise, not worse like other types of back pain,” she says.
Another clue may be that your back and joint pain feels better if you take nonsteroidal anti-inflammatory drugs or NSAIDs. Getting a blood test for the HLA-B27 gene can add another piece to the puzzle, Goodman says.
As Mack shows, living with AS doesn’t mean you can’t have a full and active life.
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