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1 in 200 Brits live with an incurable condition that 91% of the population has NEVER heard of

EMBARGOED: 00:00 on 22 June 2021

According to new research released today by the National Axial Spondyloarthritis Society (NASS):

  • The vast majority of people in the UK have not heard of axial SpA, a progressive, painful and incurable form of inflammatory arthritis.
  • 9 out of 10 people (91%) have never heard of the condition, that’s despite more people living with it than MS and Parkinson’s combined.
  • 8 in 10 people could not identify the symptoms of axial SpA.
  • 73% didn’t know that the disease starts when people are young.
  • On average it takes over 8 years for axial SpA to be diagnosed. NASS’ research found that over 9 in 10 people think that this is an unreasonable amount of time to wait for a diagnosis.
  • The National Axial Spondyloarthrititis Society (NASS) is launching a new campaign, Act On Axial SpA to increase public awareness of the condition, to drive down the current unacceptable 8 year delay to diagnosis.
  • The campaign is backed by singer-songwriter, Talia Dean, aged 36, who lives with the condition.
  • Think axial SpA. Know the signs. See your GP without delay.
  • Visit actonaxialspa.com and use the symptom checker if you’re worried.

Less than 1 in 10 people in the UK have heard of axial SpA, an incurable, painful and progressive form of inflammatory arthritis, despite 1 in 200 people in the UK living with the condition.

The research has been released by the National Axial Spondyloarthritis Society (NASS) to launch a new campaign, Act on Axial SpA. The charity is urging everyone under the age of 45 who is living with persistent back pain to check whether they could have axial SpA and see their GP if they are experiencing symptoms.

Currently, the vast majority of people in the UK don’t know the basic signs and symptoms of axial SpA. The research by the charity revealed that when prompted, 8 out of 10 people could not identify the three main symptoms of the condition.

People who were surveyed also didn’t know that symptoms often begin in mid-teens to late 20s, with 73% of people who responded to the survey indicating that they wouldn’t expect symptoms to begin until later life.

According to NASS, this lack of public awareness contributes to an average delay to diagnosis of more than eight years, because people don’t realise their persistent back pain could be serious. Indeed, according to the research only 4 in 10 people would go and see their GP, with 11% preferring to rely on the internet to find out what’s wrong and 24% choosing to ignore it. However, the longer it takes to get treatment, the more likely people are to suffer with more serious and irreversible damage. At its worst, the disease can result in spinal fusion.

The charity is calling on people to remember the key signs and symptoms of the condition, which include persistent back pain that starts when you’re under the age of 40, builds over time, improves with movement but gets worse during the night. And to see their GP without delay if they think they might have axial SpA.

Dr Dale Webb, CEO at NASS said:

“We want people to recognise the signs and symptoms of axial SpA and act immediately, to help end the unacceptable delay to diagnosis of more than eight years.

“It’s a race against time with axial SpA. As progressive condition, the longer people go without treatment the more serious and irreversible damage can be done with each passing year.

“The good news is that with the right treatment and care people can live very well with axial SpA. I would urge anyone aged 45 or under with persistent back pain to act now, to find out whether they could be living with axial SpA.”

Singer-songwriter Talia Dean, aged 36 lives with the condition.

Singer-songwriter Talia Dean, 36, started experiencing persistent hip pain when she was just 16 years old. Over time, the discomfort gradually moved to her back and became increasingly worse. For years, Talia searched for answers, but it was only in 2019 she received a diagnosis of axial spondyloarthritis.

In total, Talia spent 15 years going for tests in an attempt to understand the cause of her pain, she said:

“I started to feel like I was going mad. I was convinced I was dying. It was the worst time of my life, ever. I was so mentally unwell. I was fragile, scared, constantly knowing there was something wrong but always being told it was all in my head.”

Max Poplawski, 25, started experiencing symptoms of axial SpA when he was just five years old.

He said:

“I can understand the delay at the beginning. I was a young child who had ended up randomly with severe psoriasis on the bottom of my feet. None of the specialists I saw at the hospital could understand why – but there were days when I couldn’t go to school. My feet would crack and bleed.

“Later, when I was 13, I started having aches and pains, but I’d been competitive swimming since I was eight and playing rugby. There was a lot of, ‘you’re a 13-year-old boy – it’s growing pains; it’s normal’.

“Three years later, in 2010, I had gastro-intestinal issues which culminated with my knee swelling up to the size of a football. I ended up in and out of hospital for eight days and seeing so many different specialists.

“When I was finally diagnosed, after 15 years in pain, the drug I needed, was prohibitively expensive. I got very depressed. I felt like my sense of identity had been stripped. Here I was, 17 years old, the kid who swam, and suddenly that was gone. I couldn’t even go to school.”

Anyone who thinks they might have axial SpA should visit actonaxialspa.com to check their symptoms and see if they should speak to their GP about the condition.

ENDS

Notes for editors.

About the National Axial Spondyloarthritis Society (NASS)

At NASS we transform the diagnosis and care of people living with axial SpA. It’s an invisible and mis-diagnosed condition. Often leaving people feeling powerless, in increasing pain and extreme exhaustion.

So we campaign policy makers for early diagnosis and better services. We work with the NHS to get axial SpA identified and diagnosed quickly.

We’re determined that everyone receives effective care. We make sure people with axial SpA get the latest information and the support they need to tackle living with the condition. And we build an active community, online and through our local branches across the UK. We are with them all the way.

Axial SpA may work silently. We don’t.

About the Act on Axial SpA campaign

The Act on Axial Spa campaign is part of the Gold Standard Time to Diagnosis programme. It is the first programme in the world to call for a Gold Standard time to diagnosis of axial spondyloarthritis. It aims to reduce the average time for diagnosis from eight-and-a-half years to just one.

Over the next four years we will work closely with people living with axial SpA, primary and community care, secondary care, professional bodies, commissioners, Parliamentarians and policymakers, to focus and streamline efforts to reduce the time to diagnosis to no more than one year from symptom onset.

We will also run a campaign to improve public awareness of the condition, and it’s signs and symptoms, encouraging people with persistent lower back pain to find out if they could be living with axial SpA.

About the programme partners
The Gold Standard Time to Diagnosis programme is led by the National Axial Spondyloarthritis Society (NASS) in partnership with Norfolk & Norwich NHS Foundation Trust and RUH Bath NHS Foundation Trust.

The campaign is funded by UCB (www.ucbpharma.co.uk), a global biopharmaceutical company focused on the discovery and development of innovative medicines and solutions to transform the lives of people living with severe diseases.

Research Methodology

NASS conducted this research on 8 June, 2021. We used a self-service research platform to survey a nationally representative sample of 1,500 people and the results were weighted by age, gender, education, social grade and region. The research has a margin of error of 4.3%.

Implementation plan

You can read the Act on Axial SpA: A Gold Standard Time to Diagnosis implementation plan here.