PAGE 8. MK & BEDFORDSHIRE TODAY\. ISSUE 183. TEL:01926 359 846
Charity Focus
NASS
Ankylosing Spondylitis (AS) is a progressive inflammatory arthritic disease that can cause irreversible fusing of the spine and may affect
many other parts of the body including the eyes, lungs, bowel and heart. It affects around 200,000 people in the UK. The symptoms usually start in the late teens or early twenties and AS affects more men than women. Women do get AS but the progress of the disease is often different in women.
The most common early symptom of AS is lower back pain. This can make the disease difficult to diagnose as lower back pain is so common. The average delay from the onset of symptoms to diagnosis is around seven years. The most important message for anyone diagnosed with AS is that there is a great deal that they can do as a patient to give themselves the best possible outcome. Appropriate exercise is key to the management of AS. The National Ankylosing Spondylitis Society (NASS), a registered charity, is the only patient organisation dedicated to helping people living with ankylosing spondylitis in the UK. Their remit is to
provide information, advice and support for AS patients facing the challenge of managing this disease. NASS has around 100 volunteer branches throughout the UK which provide patients with the opportunity to meet other people with the same condition as well as provide regular exercise sessions through hydrotherapy and gym sessions supervised by physiotherapists. In addition, NASS fills a vital role as advocate for people with AS, campaigning for improvements in access to drugs that can make a real quality-of-life difference, and seeking to ensure that AS patients’ interests and concerns are taken into account by decision-makers involved in health and care services. The new anti TNF drugs which have now been approved by the National Institute of Health and Clinical Excellence (NICE) have made an enormous difference to the lives of patients with severe AS, who before these drugs were discovered had no effective treatment. One patient recently commented "After the first injection (of anti TNF) I woke with no stiffness or aches and have had none since. I no longer take painkillers and am enjoying life more and am going out a bit more". Comments such as these are gratifying to hear. With the next Annual General Meeting of NASS taking place in Birmingham on 15 November it seems appropriate to highlight the positive work provided by local branches including Milton Keynes, Bedford and Coventry. The branches, run entirely by volunteers, provide support to people with AS and offer weekly hydrotherapy and gym sessions as well as a variety of social and fundraising events held throughout the year. With its current membership standing at over 6,000, NASS knows there are many more people out there with AS and urges them to join NASS to strengthen its presence in the world of rheumatology.
NASS welcomes Dr Nichol Barkham to its AGM next month. Dr Barkham, an eminent specialist in the field of AS, having undertaken substantial research in the area of Anti TNF drug therapies in AS and was on the original British Society of Rheumatology Guideline Group for Prescribing Anti TNF Blockers in Adults with Ankylosing Spondylitis, will deliver a brief update on Anti TNF drug therapies and will offer members the opportunity to ask questions about these new therapies. It is interesting to note that NASS does not receive any government funding to provide the vital support and resources to patients with AS. It receives most of its funding through its membership fees and the fundraising efforts of its members and supporters, some of whom participate in challenge events such as the London Marathon, Great North Run and others.
If you would like more information on ankylosing spondylitis, NASS or any of its branches or would like more information on how to support NASS please visit the website: www.nass.co.uk or contact the Head Office on: 020 8948 9117 or by email: nass@nass.co.uk Registered Charity No. 272258.
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