By Dr Irwin Lim, Rheumatologist
Ankylosing Spondylitis is such a frustrating disease. It’s under recognised and this then leads, to under diagnosis and often, inappropriate or inadequate treatment.
It’s not generally because people don’t seek treatment. It’s also not because health professionals don’t want to help.
- It’s because it can be reasonably insidious in many. It’s a disease that can creep up on patients in some cases.
- As it usually begins in early adult life, it’s so often blamed on something else. If you’re male, it must be sport or that lifting you did at work. It you’re female, it’s those pregnancies which caused it. It’s poor core stability…. It’s your poor posture….It’s how you have to sit for so long at work….
- It may provide clues in areas remote from the spine. This gets treated by other unrelated health professionals and through lack of awareness or poor communication, the penny does not drop so 2 + 2 does not end up equalling 4. For eg, people with ankylosing spondylitis may get eye inflammation or they may have bowel inflammation or they may present with tennis elbow or heel pain....
- Even if diagnosed, ankylosing spondylitis typically advances slowly over many years. Patients learn to cope and get on with life, and if they don’t attend regular follow-up with rheumatologists interested in the disease, this can lead to insidious decline in physical abilities and loss of function. For eg, Think of that slowly stiffening neck and the progressive difficulty with field of vision while driving...
- Co-morbidities, such as osteoporosis usually develop silently. People don’t think about it so it’s not looked for or monitored.
The points I’ve listed above lead to late diagnosis or misdiagnosis. Patients often enter a merry-go-round seeing help from numerous chiropractors, physiotherapists, osteopaths, doctors etc, etc. They get frustrated and unfortunately, suffering is somewhat prolonged. Costs, including time and wasted opportunity, escalate.
It’s frustrating to all.
We need to keep working on improving awareness of this frustrating disease. Awareness among patients who suffer from chronic spinal pain. Awareness among the health professionals who may come into contact with various aspects of this disease.
BJC Health established the Sydney Spondyloarthritis Centre in 2011. We raise the profile of these diseases, we provide a better pathway to diagnosis, provide education as well as world-class treatment. Most importantly, we care & we want to improve the lives of people suffering from these diseases. Read about it here.