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An Olympic wait for diagnosis

People with axial SpA(AS) are waiting an average of 8.5 years to be diagnosed with the condition.

By introducing the world’s first Gold Standard for the diagnosis of axial SpA (AS), we want to change this and reduce the average waiting time to just one year. Speedier diagnosis will enable people to get the right treatments earlier and live well with axial SpA (AS) sooner.

Want to help us make this change? Please sign-up here to stay in touch.

We all waited for a diagnosis

Anne, Andrew, Dasha and Paul all waited more than eight years to be diagnosed with axial SpA (AS).

Anne Fitzpatrick

I thought living in chronic pain was just normal. It took me 30 years to get a diagnosis of axial SpA (AS). I saw doctors and healthcare professionals, and even a rheumatologist who told me I didn’t have axial SpA (AS).
In 2016, I finally got the right diagnosis and treatment that relieved the pain. It was such a relief; I started living my life.

Andrew Moule

I first got backache when I went jogging at the age of 25. Over the next 20 years I was told by my GP that I didn’t have axial SpA (AS). I was told I was overweight or had dodgy disks, but nothing I tried eased the pain for more than a few days. I was eventually diagnosed in 2017. Now aged 56, I’m in a much better place but I still blame myself for not pushing it more years ago.

Dasha Karzunina

When I was referred to an eye hospital for uveitis, no one thought it could be axial SpA (AS), despite me being in a high-risk group. I waited eight years to be diagnosed with axial SpA (AS). I found out when I was 27 and while I waited, I felt lost and scared.

Paul Curry

I waited 10 years for my axial SpA (AS) to be diagnosed. I saw doctors, physios and chiropractors who put my chronic pain down to sport injuries. While I waited my spine fused and I gave up my dream of a career in professional sport. When I received a diagnosis, at last I knew the pain was out of my control and could be treated.

Together, we can change this

NASS has launched the Gold Standard Time to Diagnosis programme and is determined to reduce the average time to diagnosis of axial SpA (AS) to just one year.

We can’t make this change alone. It’s vital that we work with the healthcare community and people living with axial SpA (AS) to build the consensus needed to make this change.

Sign-up to stay in touch and find out how you can help us ensure that thousands of people with undiagnosed axial SpA (AS) are able to live well with the condition sooner.

 


About the Gold Standard Time to Diagnosis programme

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 and is funded by UCB.

UCB (www.ucbpharma.co.uk) is 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.

The Gold Standard Time to Diagnosis programme is funded by UCB as sponsor of the project. UCB is a non-voting member of the project board and has no editorial control over the content or output of the programme.