
Living with axial SpA
Help and advice on working, travelling, pregnancy and driving
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Axial SpA (AS), is a form of inflammatory arthritis that most commonly affects the spine. It is however a complex condition which affects different people in different ways, often with other related issues. From the more visible physical changes to the less obvious invisible symptoms that many suffer, NASS is fighting on all fronts to try to raise awareness. There is currently no cure for axial SpA (AS).
1 in 200 of the adult population in the UK have axial SpA (AS). That's twice as many as multiple sclerosis and Parkinson's disease.
Axial SpA (AS) is a condition that affects young people. Symptoms start late teens to early twenties, with the average age of onset being 24.
The current average delay to diagnosis from when symptoms start is 8.5 years, by which irreversible damage to the spine may have occurred.
59% of people with axial SpA (AS) report experiencing mental health problems compared to 25% of those with musculoskeletal conditions overall.
Many people living with axial SpA (AS) including ankylosing spondylitis (AS) know that often people don’t know much about the condition at all and find it hard to understand:
At my lowest point when I was in agony and could barely move, a work colleague of mine was going through breast cancer. Despite the fact she was well enough to work and go out partying, she was treated with kid gloves by all around her. I watched from my vantage point of severe agony while she was diagnosed and treated swiftly with the best the land could offer. The lack of support from people around me is what I carry with me bitterly. Cancer, they could deal with. Ankylosing spondylitis? First the slight look of confusion, then the embarrassed titter about…. the name, ‘What? What a funny name…Ank… what…?’ If I tried explaining it would be brushed off as a bit of arthritis, ‘Oh my mums got that in her hand…’.
Read our axial SpA facts below to find out more about the condition.
Despite a widespread lack of awareness of the condition, axial SpA is not rare and affects an estimated 1 in 200 of the adult population in the UK (approximately 220,000) which is twice the prevalence of multiple sclerosis (MS) (1 in 600 of whole UK population or 107,000), a much better-known condition. The burden of musculoskeletal (MSK) conditions on the NHS and economy is well documented with 6-9% of people presenting to general practice doing so with back pain; 7-15% of these will show features of axial SpA.
Arthritis is too often associated solely with older people and the wear and tear that comes with ageing. Axial SpA however tends to present in late teens to early twenties with an average age of onset of 24. 95% of people are aged less than 45 years when their symptoms start – a time of life when most people are at an important stage of their lives, looking to forge social relationships, start families and build a career.
It used to be thought that three times as many men as women had the disease. This was based on a diagnosis of the disease using x-ray. Men are more likely than women to experience changes to the bones and fusion, and thus they were being picked up using x-ray.
Over time MRI’s were developed which could identify inflammation. Women are more likely than men to experience inflammation rather than fusion.
To incorporate these changes in diagnostic techniques, the term axial spondyloarthritis (axial SpA) was developed. This is is an umbrella term and it includes:
Ankylosing Spondylitis or radiographic axial spondyoarthritis (AS)
Where changes to the sacroiliac joints or the spine can be seen on x-ray.
Non-radiographic axial spondyloarthritis (nr-axial SpA)
Where x-ray changes are not present but inflammation is visible on MRI or you have symptoms.
The prevalence of nr-axial SpA versus AS is thought to be a ratio of 1:1.
Around 7 in 10 people with non-radiographic axial spondyloarthritis have visible inflammation in the sacroiliac joints or the spine when an MRI of the back is carried out.
Around 3 in 10 may not have any inflammation visible on MRI despite symptoms of back pain. Some may never go on to develop visible inflammation on MRI. The reasons for this are still not well understood but may be due to the sensitivity of MRI.
There is a strong association between axial SpA and a gene called HLA-B27
In addition to the spinal pain most often associated with axial SpA, people with the condition can also have a range of complications and co-morbidities (other conditions related to this):
Some of the less visible complications of axial SpA can be the most debilitating – many people will suffer from severe fatigue and most will have a flare at some point which can make socialising, work and exercising problematic. The overwhelming feeling of not being able to be ‘normal’ when suffering from fatigue or in a flare also leads to people developing stress, anxiety and other related disorders. The invisibility of this condition means it is often difficult to communicate its impact to loved ones, leading to a profound effect on relationships – people with axial SpA are more likely to remain single or divorce than the general population and women with axial SpA are less likely to have children. It is rare that any sort of counselling service is offered to someone with axial SpA, with just 7.5% of clinics reporting that they offer psychological support as part a multidisciplinary team.
Axial SpA has a profound effect not only the personal relationships of people with the condition but also professionally.
The range and quality of services generally offered around the UK are variable:
In addition to this, whilst support is often available through a variety of mediums including helplines and additional appointments with their rheumatologist:
Help and advice on working, travelling, pregnancy and driving
Read moreLearn more about how NASS campaigns to raise awareness of axial SpA - and how you can get involved.
Read moreYou can have an effect on people’s lives by simply doing something you enjoy, or even that challenge you’ve always wanted to try.
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