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World AS Day: Living with chronic pain: axSpA affects thousands of undiagnosed South Africans
World Axial Spondyloarthritis (AS) Day is observed globally on the first Saturday of May – which falls on the 6 May this year, to raise awareness around an often overlooked but serious disease, axial Spondyloarthritis, colloquially referred to as axSpA.
Staff Writer
May 5, 2023
Novartis South Africa is therefore collaborating with the Axial Spondyloarthritis Association of South Africa (ASASA) to create awareness about the existence and extent of axSpA in the country.1
AxSpA, an umbrella term for ankylosing Spondylitis (AS) and non-radiographic axial Spondyloarthritis (nr-axSpA), is a chronic inflammatory disease that can cause chronic pain and structural damage.2
AS is a type of axSpA where changes to the sacroiliac joints or the spine can be seen on an X-ray. Conversely, nr-axSpA doesn’t show any x-ray changes, but inflammation is visible on an MRI scan or through other symptoms.2
Symptoms of axSpA can be a slow or gradual build-up of pain over an extended period, with early-morning stiffness and pain being commonplace. There is reason to consult a rheumatologist if the pain persists for longer than three months. Other symptoms may include weight loss, fatigue, and nightly bouts of sweat.2, 3
The disease commonly occurs in the joints, bones, spine, eyes and digestive tract, and usually begins between 20 and 40 years of age.3
Early detection is crucial
According to Maranda van Dam, Chairperson of the Axial Spondyloarthritis Association of South Africa (ASASA) and a patient of axSpA herself, patients with this serious chronic inflammatory disease are on average only diagnosed about 10 years after the initial symptoms have appeared.4
This delay in diagnosis is generally due to a lack of awareness among the general public, as well as a shortage of rheumatologists, and lack of knowledge of the disease among healthcare providers. Van Dam estimates that there are more than 150 000 patients in South Africa with the disease, but only about 3000 are diagnosed. Furthermore, the country only has about 85 rheumatologists for a more than 60 million strong population and no accurate registries that show real-life data of this disease .4
“Delayed diagnosis has a significant emotional and financial burden on patients, as the disease can cause permanent harm or disability if left untreated. Moreover, out of all the rheumatic diseases, axSpA is not considered a prescribed minimum benefit disease by medical schemes,” says van Dam.
Novartis South Africa is supporting ASASA’s efforts to raise awareness through various initiatives, including walking events across the country. These events encourage people with axSpA to keep moving, as physical activity helps with pain management and slows down the degeneration associated with the disease. The event also provides a platform for patients to connect with each other and share their experiences.
“A key message to patients who have just been diagnosed with axSpA is to seek support from organizations such as ASASA, which is free to join, and provides patients with the necessary support and resources,” says Sibonile Dube, Novartis Head of Communications and Engagement for the Middle East and Africa.
“Additionally, is important to know that rheumatologists are the only healthcare professionals who can diagnose axSpA, and those patients who wait years to get diagnosed often suffer from serious emotional and financial costs because of this delayed diagnosis. Organisations such as these are important to support and help them overcome these issues.”
Diagnosis is still a major concern, and Novartis and ASASA encourage people with long-lasting pain to be mindful of other common symptoms and seek professional medical advice sooner rather than later. By increasing awareness of this lesser-known rheumatic disease, the lives of thousands of undiagnosed patients can be fundamentally improved over time.
References:
About World AS Day. 2023 (Accessed 06 March 2023, at https://asif.info/worldasday/#:~:text=This%20event%20is%20a%20walk,some%20media%20to%20the%20event.)
About AxSpA. 2023 (Accessed 06 March 2023, at https://axspasa.org.za/about-as/.)
Ankylosing Spondylitis. 2023 (Accessed 06 March 2023, at https://www.arthritis.org/diseases/ankylosing-spondylitis#:~:text=Axial%20spondyloarthritis%20(axSpA)%20mostly%20affects,%2Drays%20(nonradiographic%20axSpA).)
What is axSpA. 2023 (Accessed 06 March 2023, at https://axspasa.org.za/infographics/.)
Source: Norvatis media release