National Ankylosing Spondylitis Society, Jersey
Secretary, Martin Postlethwaite, Last Resort, 2 Pine Court, Links Estate, Grouville, Jersey JE3 9DB
www.nass.co.ukmadlinguist@hotmail.co.ukAbout
NASS was founded by a group of patients, doctors and physiotherapists at the Royal National Hospital for Rheumatic Diseases (RNHRD) in Bath in 1976.
The MinThe founding members included the late Dr Allan St John Dixon, MD, FRCP, who had a long and distinguished career in rheumatology and was still involved with NASS as its current Vice President until his death in June 2014. Dr Dixon worked on the formation of NASS with Mike Tanfield and the late John Coates, both of whom had AS. They were joined by Dr Richard Jacoby and Dr Anthony Clarke as Medical Advisers.
The first NASS director, Fergus Rogers, joined in 1980 and soon became a commanding figure in the world of AS. He did a huge amount to raise the profile of AS and the needs of people with AS. Fergus was instrumental in setting up many of our NASS branches. He is remembered fondly by many NASS members for his immeasurable care and support.
NASS has 3 main aims.
To seek a cure for ankylosing spondylitis and related conditions, and improve their treatment in the UK
To promote awareness of these conditions in the UK
To provide guidance, advice and information for people affected by these conditions including their families, their carers and their employers
NASS is the only registered charity in the UK dedicated to the needs of people with AS in the UK.
Axial Spondyloarthritis is still a relatively new term in rheumatology
Currently the formal diagnosis of ankylosing spondylitis (AS) relies on your rheumatologist seeing damage on x-ray of your sacroiliac joints. These changes are called sacroiliitis.
However it may take years for changes to show up on x-ray and some people may never show changes on x-ray. During this time you may be experiencing a lot of pain in your back.
Axial Spondyloarthritis or axial SpA for short (abbreviated as axSpA) refers to inflammatory disease where the main symptom is back pain, and where the x-ray changes of sacroiliitis may or may not be present.
Within axial SpA there are 2 groups:
Ankylosing Spondylitis (AS)
Where the x-ray changes are clearly present.
Non-radiographic axial spondyloarthritis (nr-axSpA)
Where x-ray changes are not present but you have symptoms.
Up to 70% of people in this group have visible inflammation in the sacroiliac joints and/or the spine when an MRI of the back is done.
30% of people in this group may not have any change visible on the MRI despite symptoms of back pain. In fact some of these patients may never show any inflammation on an MRI even if this is repeated later on in life. The reasons for this are still not well understood but may be due to how sensitive our methods to image the joints are.Categories: Charities, Healthcare.
