Chasing the Right Diagnosis for Ankylosing Spondylitis

Chasing the Right Diagnosis for Ankylosing Spondylitis

Living with Ankylosing Spondylitis: A Journey of Misdiagnoses and Hope

Doctor Examining Patient with Back Pain

Carlos Julio Aponte, MD, still remembers his first patient with ankylosing spondylitis (AS). It was over 40 years ago when a former traffic controller came to him, plagued by agonizing back pain since the age of 20. This man couldn’t hold a job, and doctors were unable to pinpoint the source of his pain. In fact, one doctor even believed his symptoms were purely psychological. However, Aponte had a hunch. He asked his patient when his back pain was at its worst, and the answer confirmed his suspicion. The excruciating morning stiffness that lasted for hours pointed to ankylosing spondylitis – a type of arthritis that primarily affects the spine.

Understanding Ankylosing Spondylitis

The most common complaint associated with AS is back pain, something that almost everyone experiences at some point in their lives. However, this disease is rare, affecting only two to five out of every 1,000 Americans. Detecting AS is not easy. It can take an average of 7-10 years from the onset of symptoms to receive an accurate diagnosis. This is because AS manifests differently in each individual, and there is no definitive diagnostic test for the disease. As the rheumatologist David Borenstein puts it, detecting AS is like looking for a “needle in a haystack.”

David Borenstein

However, recent medical advancements have shed more light on this condition. Imaging techniques, such as X-rays, can now detect damage in the sacroiliac joints, which are vital in diagnosing AS. Despite the progress, many people still face a frustrating journey of misdiagnoses. Don Markham, a Dallas native, experienced this firsthand. It took him almost 30 years to confirm that he had AS after struggling with serious eye inflammation called uveitis. The incorrect diagnoses and the ensuing adverse effects of the medications caused Don to contemplate suicide at one point. Finally, after three dozen doctors, he arrived at a rheumatologist in Dallas, who correctly identified his condition.

The Challenge of Overlooking AS

Don Markham

One of the main reasons for the delayed diagnosis of AS is the lack of awareness among healthcare professionals. Since AS is relatively rare, general practitioners may not be familiar with its symptoms and may not consider referring their patients to a rheumatologist. This was also the case for Don Markham, who faced a series of incorrect diagnoses including cancer and neurological issues. It wasn’t until he visited a rheumatologist who recognized his symptoms, that he finally received the correct diagnosis. Markham’s experience highlights the importance of raising awareness among medical professionals about this often overlooked disease.

A Personal Journey of Resilience

Charis Ann Hill

Charis Ann Hill, a 33-year-old model from Sacramento, California, has a similar story. Raised by a mother in North Carolina, Hill’s father had AS, but they never anticipated developing the disease themselves. However, in their teens, Hill started experiencing joint pain, attributing it to sports-related injuries. Over time, their symptoms worsened, and medical professionals dismissed them as sports-related issues or anxiety. It wasn’t until Hill contacted their estranged father that they realized they might have AS. Officially diagnosed shortly after, Hill struggled with the emotional toll of the diagnosis.

Living with chronic disease often brings about depression, and Hill was no exception. The fear of becoming like their father, who experienced the debilitating effects of AS, haunted them. However, with time, Hill learned to accept their condition. They sought solace in the fact that their delayed diagnosis gave them the chance to live life to the fullest, engaging in adventures, pursuing athletic endeavors, and studying abroad. Hill’s journey reminds us not to rush acceptance, but rather to embrace our own timeline for coming to terms with life-altering conditions.

Overcoming Challenges and Looking Ahead

As awareness about AS grows, so does our understanding of the disease. AS was once believed to predominantly affect men, leading many doctors to overlook symptoms in women. However, recent estimates indicate that about a quarter of AS cases occur in women and girls, and the gender breakdown is equal in the related condition known as non-radiographic axial spondyloarthritis (nr-axSpA). Furthermore, advancements in treatment options have significantly reduced the suffering experienced by AS patients.

Understanding Your Spine

However, challenges still persist. The limited time doctors have with their patients often makes it difficult to diagnose uncommon diseases like AS. Rheumatologist Carlos Julio Aponte emphasizes that 15-minute appointments are not enough and that good communication is crucial in uncovering vital details during consultations.

Living with AS requires resilience and a supportive healthcare team. By raising awareness among both medical professionals and the general public about the challenges faced by AS patients, we can work towards earlier diagnoses, improved treatment options, and ultimately, a brighter future for those living with this often misunderstood disease.

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