It would help if the general public knew what the hell AS is. 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. I fought my way through four rheumatologists in different hospitals, private and NHS, until I finally got a diagnosis. But the sheer disinterest, blank stares and 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…’.
Adults in the UK
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.
Years to diagnosis
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 report suffering mental health problems compared to 25% of those with musculoskeletal conditions overall.
Despite a widespread lack of awareness of the condition, axial SpA (AS) 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 (AS).
Arthritis is too often associated solely with older people and the wear and tear that comes with ageing. Axial SpA (AS) 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.
Gender and disease spectrum
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 (AS)
Where changes to the sacroiliac joints or the spine can be seen on x-ray.
Non-radiographic axial spondyloarthritis
Where x-ray changes are not present but inflammation is visible on MRI or you have symptoms.
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 (AS) and a gene called HLA B27
- About 8% of white western Europeans carry this gene
- Although HLA B27 is present in over 85% of people with axial SpA (AS), only about 1 in 15 people who are HLA B27 positive go on to develop the condition. This means that the gene alone is not responsible for people developing axial SpA (AS) but must contribute to it
- It is now believed that over 100 genes are involved in the condition and that HLA B27 is responsible for no more than 25 – 30% of the genetic risk
- One gene of interest is ERAP1 and researchers believe that some variants of this gene may even protect against developing axial SpA (AS)
In addition to the spinal pain most often associated with axial SpA (AS), people with the condition can also have a range of complications and co-morbidities (other conditions related to this):
- 26% of people will have uveitis which can cause blindness
- 9% will have psoriasis a condition with a lot of stigma
- 7% will have inflammatory bowel disease which can lead to permanent damage and the need for invasive surgery and the use of colostomy bags
- 25% of people will have irreversible spinal fusion which causes kyphosis and deformity as well as an increased risk of spinal fracture
- fused ribs leading to difficulties breathing
- fused feet leading to difficulties in walking as well as frequently needing joint replacements
- Axial SpA (AS) is also closely associated with osteoporosis, meaning an increased risk of fracture in general
Some of the less visible complications of axial SpA (AS) 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 (AS) are more likely to remain single or divorce than the general population and women with axial SpA (AS) are less likely to have children. It is rare that any sort of counselling service is offered to someone with axial SpA (AS), with just 7.5% of clinics reporting that they offer psychological support as part a multidisciplinary team.
AS has a profound effect not only the personal relationships of people with the condition but also professionally.
- An estimated 10 – 40% of people have to give up work and tend to retire 9.5 years earlier than the general population
- 3.5% of people with axial SpA (AS) report absenteeism at work
- 22% report presenteeism
- The total work-related costs of axial SpA (AS) due to early retirement, absenteeism and presenteeism is estimated to be at £11,943 per person with axial SpA (AS) per year
Services in the UK
The range and quality of services generally offered around the UK are variable:
- Specialist clinics are available in only 57% of NHS Trusts and Health Boards
- 39% of NHS Trusts and Health Boards do not have a rheumatologist with a special interest in axial SpA (AS)
In addition to this, whilst support is often available through a variety of mediums including helplines and additional appointments with their rheumatologist:
- 20% of people are not satisfied with the support that they receive during a flare
- 39% want more information on fatigue
- just 12% of people report that they have a written care plan, although this is above average for people with long term conditions generally, which currently stands at 3%