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“2020health is an important and thoughtful contributor to the health debate”

Dr Sarah Wollaston MP, Chairman, Health Select Committee

 
 

Press Release JFK’S Backache – why has no one heard of Ankylosing Spondylitis?

A common disease needs to come out of the closet.
New report calls for greater awareness of ‘forgotten condition’

Ranked as one of America’s best loved presidents, John F. Kennedy skilfully harnessed an elite education and a reputation as a military hero to carve out an iconic period in office. It was common knowledge that JFK suffered from severe back pain but the precise details were a closely guarded secret. That was until his medical records were released in 2002.

It is now believed that JFK suffered from genetic autoimmune disease which includes conditions such as ankylosing spondylitis (AS), a form of inflammatory back pain which affects the spine, including bones, muscles and ligaments.

Ankylosing Spondylitis (AS) describes the condition where some or all of the joints and bones of the spine fuse together. Sometimes other areas of the body such as the eyes and bowels can also be effected. This new report from 2020health Ankylosing Spondylitis: Hard to say, hard to see, time to hear, highlights that although twice as many people suffer from AS as multiple sclerosis (MS), many more people are aware of the latter.

Research carried out by the National Ankylosing Spondylitis Society indicates that around one third of people with AS give up work before retirement age, and of those who are in work (either full or part-time), a quarter (26 per cent) said that their AS had affected their career progression.

CEO of 2020health Julia Manning said: “A lack of awareness of the condition, including among GPs and clinicians, only compounds the problem. AS is often overlooked, misdiagnosed or diagnosed late as a condition. On average the time delay between the onset of the disease and correct diagnosis is extraordinarily between 8.5 – 10 years, although in some cases the delay can be up to 30 years or more. In that time people can suffer in considerable pain, adversely affecting home and working life.”

Huw Irranca-Davies MP, whose personal story is detailed in the forward, commented: “I want the Government to help other people with AS, now and in the future, to get the best care so that they can stay active and in work for longer, affording them a good quality of life. That is why I welcome this report by 2020health as it aims to not only raise awareness of AS but also rates of diagnosis and the quality of long term care and treatment patients receive.”

After research and discussions with patient groups and experts in the field, the report focuses on:
• the sustainable application of recommended standards and best practice
• the need to increase the participation and responsibility of patient, professional and policy maker in AS care and treatment
• the need to improve rates of diagnosis as a necessary step in the process
• that patients are supported with the appropriate long-term care and treatment.

Manning said: “The challenge is to see both the patient and health professional educated and empowered so they can work together to achieve the best possible outcome – the patient returning to active life.”

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This project was undertaken with an unrestricted educational grant from AbbVie Ltd.