N.A.S.S Dingwall Branch Information Page

Ankylosing Spondylitis International Federation

ASIF
5 GROSVENOR CRESCENT
LONDON
SW1X 7ER

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Made up of over twenty national organizations

ANKYLOSING SPONDYLITIS
ANKILOZIRAJOÈI SPONDILITIS
ESPONDILITE ANQUILOSANTE
ESPONDILITIS ANQUILOSANTE
SPONDILOARTRITE ANCHILOSANTE
SPONDYLARTHRITE ANKYLOSANTE
MORBUS BECHTEREW

BECHTEREVIKU

Call it what you like it all comes under the same

ANKYLOSING SPONDYLITIS INTERNATIONAL FEDERATION (ASIF)

Acts as a central body for national self-help organisations.
To assist with encouragement and advice in the formation of similar patient-led organisations in other countries.
To encourage and support international symposia on research into the condition and its associated diseases.
To explore common social problems with outside commercial and governmental organisations: such as life and medical insurance, and assurance organisations, vehicle driving authorities, and driving accident insurance companies.
To encourage the development and acceptance of modern physiotherapy techniques by patients, physiotherapists, and doctors.

WE CAN HELP YOU HELP YOUR PATIENTS

APPLY TO ASIF FOR UP-TO-DATE LIST OF NATIONAL SOCIETIES


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ANKYLOSING SPONDYLITIS

A painful, progressive, rheumatic disease of the spine whose average age of onset is twenty-four years old, the sex ratio of diagnosed cases is three to one in favour of males.

Peripheral joint involvement is experienced from time to time by a majority, as is iritis a common experience by over 50% of those who have the condition.


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THE FOUNDATION OF THE ANKYLOSING SPONDYLITIS INTERNATIONAL FEDERATION (ASIF)
HISTORY OF ASIF, ITS ROLE AND THAT OF THE COMPONENT SOCIETIES
UNIFIED PATIENTS

Between the foundation of the first society in 1975 and the end of 1990 patient organisations have been established in over twenty other Countries. This demonstrates a unifying recognition by people in many countries who have the condition, that patient education plays a critical role in disease management. It also demonstrates a uniting desire by the early societies to assist fellow patients in other countries to form similar organisations.


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THE START OF INTERNATIONAL CONTACTS

All societies produce educational literature for their members. Some of these societies also hold regular educational symposia for their members on the medical and social aspects of the condition as part of their continual patient education programme. These lectures, given by health professionals, have often been attended by people instrumental in the foundation of other national societies. These meetings have proved to be valuable time for the exchange of information, and to graft new ideas onto their own societies. It also helped those people to increase their knowledge of their condition.


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THE START OF ASIF

In 1988 representatives from the majority of the societies met in the historic spa town of bath in England to discuss the foundation of ASIF. A constitution which had previously been discussed by the various national societies was agreed.

It was their wish that ASIF should be British registered organisation run from the offices of the National Ankylosing Spondylitis Society (NASS) whose director would be working President of newly formed federation. An Executive Committee was formed, made up of delegates from five countries.

The constitution was agreed by various statutory bodies in Britain. Their suggested amendments were ratified at a meeting in Leukerbad in Switzerland. in 1989, as was the appointment of the President and Executive Committee.


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THE DISTRIBUTION OF PRESENT NATIONAL SOCIETIES

AS societies have now been formed in most European countries, as well as Australia, Canada, Hong Kong, Peru, Singapore and the USA. Quite naturally, after such a dramatic explosion in the foundation of new societies, the pace in their formation has slowed down. However, the strong desires to continue spreading and sharing knowledge and expertise with their follow spondylitics in other continents continues. This is reflected by the fact that ASIF recognises that there is much potential for societies in Asia, South America, and the Arab countries.


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HOW ASIF CAN ASSIST IN THE FORMATION OF OTHER SOCIETIES.

ASIF could, for instance, play a role in funding the printing and distribution of simple Guidebooks for Patients in those countries where money is not available for this purpose. These books could be a useful stimulator for new society and could act to encourage seed membership. The main objective of our societies is patient education, and emphasise the important play in management of their disease.


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SOME COMMON SOCIAL PROBLEMS

Naturally, because of the great variation in the condition, there are people who are severely physically disadvantaged by it. There are also social disadvantages, sometimes experienced even by those who have relatively mild disease. For example, many Life Insurance companies add a high loading on to the premiums of those with the condition, in most cases without bothering to ascertain its severity. This is partly due to ignorance of the condition as it is known today. They continue to insist on believing in the image of the disease as it was known one hundred years ago. Some of the national societies have attempted with little success to educate the medical officers of those companies hoping to change their blanket attitude to the condition.

With our rapidly expanding combined membership we hope to attract their attention, as many of these companies have a multi national link. There is a similar problem with health insurance companies, who also demonstrates a degree of ignorance in the condition and its treatment by their medical advisors.


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THE MEDICAL AND PARAMEDICAL PROFESSIONS

The Federation also wishes to promote a greater awareness and encourage additional interest about the condition within the medical profession. By doing this we hope to play a role in reducing the distressingly long period of misdiagnosis associated with the disease, and to influence the acceptance of modern management. The condition is much more common than previously though. it is not difficult to diagnose but difficult to suspect if the physician is unaware of its existence.

In recent years there have been encouraging signs that distressing period of misdiagnosis is being reduced. We believe that this was stimulated by the discovery in 1993 of the association between the antigen B27 and ankylosing spondylitis.

We are, however, concerned that there is a world wide lack of emphasis in medical schools in the teaching of rheumatic diseases. This includes ankylosing spondylitis. We are concerned that once the novelty of the B27 discovery has worn off there could be a slip in the improvement in diagnosis.


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PHYSIOTHERAPY

We also wish to spread awareness of the latest developments in physiotherapy techniques. Physiotherapy is the cornerstone in the management of the condition. Therefore, most national societies have formed branches made up of their members receiving local group physiotherapy, after working hours, under supervision of a qualified physiotherapist. The number of groups within each society varies and is mainly dictated by the expertise and facilities available. Some societies have produced professionally made audio cassettes, video films and wall charts to assist their members in their home exercise programme.


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DOCTORS, PHYSIOTHERAPISTS AND ASIF

ASIF can advise doctors and physiotherapist where the appropriate societies can be located in their own country. or where these societies and their branches can be found when they are on overseas visits. We can also guide and advise them as which spas take a special interest in the treatment of the condition.


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RESEARCH AND ASIF

The discovery in 1973 of a link between Human Lymphocyte Antigen B27 and the disease triggered an explosion of research in some countries. There is evidence to suggest that there is strong association between genetic background and an environmental trigger. This is not an uncommon theory, as it has been previously proved that certain types of reactive arthritis have been initiated by known gut bacteria. Studies of identical twins have shown that in some cases one twine contracts the condition while the other remains free.

One of the aims of ASIF is to stimulate research. There can be a role to play here through ASIF acting as a co-ordinator in non-evasive research, taking advantage of its vast combined membership. An example of this was a project where the British and Swedish societies sent an extensive questionnaire to the members of their societies. The cut-off point was the first 1,500 returns from the British members and the first 850 returns from the Swedish members.

The results have been stored on computers in Bath. Many new findings have emerged, the study continues and the results have frequently been published in the world's leading rheumatology and medical journals.