Carlos Julio Aponte, MD, remembers his very first patient with ankylosing spondylitis (AS). This patient, a former traffic controller, had been suffering from agonizing back pain since the age of 20, making it impossible for him to hold a job. The source of his ailment was unknown to doctors at the time, and one even suspected that the symptoms were psychological and prescribed medication for that. Aponte, a rheumatologist in Cleveland, Ohio, asked the patient when his back pain was at its worst. He replied that it was worst in the morning and it took him nearly two hours to get out of bed and stand up. Aponte recognized this as a telltale sign of AS, even though knowledge about inflammatory diseases like AS was limited in the 1970s.
AS is a rare type of arthritis that mainly affects the spine. The most common complaint from patients with AS is back pain. However, it is a very rare disease, with only two to five out of every 1,000 Americans having it. Detecting AS can be challenging and often takes an average of 7-10 years from the onset of symptoms to an accurate diagnosis. The damage in the sacroiliac joints, which connect the pelvis and lower back, only shows up on X-rays in the later stages of the disease. Furthermore, AS can manifest differently in different people and there is no single definitive test for diagnosis.
Don Markham, a patient with AS, experienced a long journey to confirm his diagnosis. It took him about seven years to finally determine that AS was the cause of his serious eye inflammation called uveitis. Looking back, Markham believes it actually took closer to 30 years to receive the correct diagnosis. He remembers his mother using hot towels to soothe his knees when he was 10 years old, but those episodes were dismissed as growing pains. It wasn’t until he developed uveitis around the age of 40 that he sought medical attention. His eye doctors couldn’t determine the cause, but suspected an autoimmune disease. Markham ignored the symptoms and it wasn’t until several years later that he sought answers for his pain and inflammation. After consulting with numerous doctors, Markham was finally diagnosed with AS by a rheumatologist in Dallas.
The process of diagnosing AS can be challenging due to the variety of symptoms that can mimic other conditions. Pain in the buttocks and heels, psoriasis, and gut problems that resemble Crohn’s disease or ulcerative colitis can all be symptoms of AS. However, the limited time available in medical appointments often contributes to missed diagnoses. Rheumatologists emphasize the importance of communication and asking the right questions to make a proper diagnosis.
Doctors have become better at recognizing the signs of AS and identifying the types of people who are prone to develop the disease. Treatments have also improved, providing patients with better options and reducing the amount of suffering they experience. AS was previously thought to predominantly affect men, but it is now known that women make up about a quarter of AS cases. In cases of non-radiographic axial spondyloarthritis (nr-axSpA), the gender distribution is evenly split.
Charis Ann Hill, a 33-year-old patient from Sacramento, CA, initially believed that AS was solely a “man’s disease” because their father had it. Hill experienced symptoms like knee pain as a teenager but dismissed them as sports-related aches. It wasn’t until their body started deteriorating in college that Hill sought medical help. Multiple doctors didn’t recognize the symptoms and attributed them to anxiety. Eventually, Hill reached out to their estranged father who advised them to seek medical care for AS specifically. Hill was diagnosed the next month.
Although the diagnosis brought relief to many, Hill initially struggled with fear and depression. The long journey to diagnosis took an emotional toll. However, Hill is grateful for the care-free years they were able to experience before their diagnosis. They were able to live life to the fullest before AS took its toll.