AS in Wales

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					The research is organized
    by the School of
  Medicine at Swansea
  University and being
 funded by the Medical
Research Council (MRC)

What is the
                                  AS in Wales
                                  V O L U M E      1 ,   I S S U E     1                                                       N O V E M B E R          2 0 0 9
purpose of the
study?                      Welcome to the first newsletter for the Population-based Ankylosing Spondylitis (PAS) cohort in
                            Wales study. This will be a regular feature to keep you informed of new developments and progress
Ankylosing Spondylitis      of the study, as well as important results from the study. We are grateful for all your participation and
(AS) is the second most
                            completed questionnaires which are already yielding important information about AS. We hope you
common form of in-
                            will all continue to contribute, as without participants like you, this study would not be possible.
flammatory arthritis.
But, there is a lack of
research into the con-
                            Quotes from people participating
dition. This study will     “I feel the main cost of my AS is        “I would value free admission to                           “I am unsure as to whether my
help us to better un-       borne by my wife and (very               my local swimming pool/gym                                 ongoing participation in this
derstand the condition.     grown up) 12 year old son. Deal-         which would help encourage my                              study will be of any use to you.
We will be looking at       ing with somebody who can be             self-help programme.”                                      While in my late teens and 20s
why some people de-         the most miserable sod in the            (56 year old man)                                          I was virtually crippled by AS,
velop severe AS. We         world (it just comes on for no                                                                      I am now virtually symptom
would like to identify      apparent reason). We are getting                                                                    free. For example I used a
patients who could          better at dealing with it, but it’s                                                                 walking stick at 19. Yesterday
benefit from early use      never easy, they can both pick up                                                                   at 58, I ran 10 miles. Please
of intense therapy in       now quite quickly when dad’s not                                                                    excuse the boastfulness. I am
order to prevent the        feeling too good, and also them                                                                     just so delighted that I
development of severe       understanding that sometimes I                                                                      can.” (58 year old man)
AS. We want to exam-        am just too exhausted to join in
ine the impact and cost     with normal family activities.
of AS in order to bet-                                                                                                          “I have had hip surgery twice
                            Without their help, love and un-
ter estimate the cost of                                                                                                        this year. I have had resurfac-
                            derstanding I could never deal           “The emotional cost is vast based
new treatments, so that                                                                                                         ing of both hips. I do not think
                                                                     on the restrictions of physical
hopefully they are made                                                                                                         the long term use of medica-
                            “AS has had a lot of effect on my        movement which has affected the                            tion i.e. arcoxia helped my
available sooner for                                                 sport I played, the vehicles I drive
people with AS. The         working life, because of difficulty                                                                 condition which I have been on
                            in movement of neck and shoul-           and the personal relationships.”
study can therefore                                                                                                             for a period of 4 years.”
                            ders.”                                   (63 year old man)
help improve care for                                                                                                           (49 year old man)
people with AS. For         (72 year old man)
more information
please see the study        Characteristics of study participants
website http://       - The average age of people           - 18 people in every 100 also have                           - People with AS retire 10 years
.uk/                        participating is 54 years old         inflammatory bowel disease (IBD),                            earlier (9 years earlier for men
                            (youngest person is aged 20 and       14 in every 100 also have psoriasis                          and 11 years earlier for females)
INSIDE THIS                 the oldest person is aged 100).       (inflammation of the skin) and 37                            compared to those without AS in
                                                                  in every 100 have iritis                                     their profession.
ISSUE                       - There are 238 men and 84            (inflammation of the eye).
                            women (3 males to every 1 fe-                                                                      - People with AS have a Work
Quotes from
                            male) participating.                  - 42 people in every 100 have seen                           Productivity Loss of 7%.
                                                                  their GP in the past month, with an                          Consequently, improved treat-
participating      1        - Average age of first symptoms       average number of 1.5 visits per                             ment may improve work pro-
                            is 25 years and the age of first      month.                                                       ductivity and time remaining in
Characteristics             diagnosis is on average 34 years                                                                   work, thus offsetting some of
of study                    with a resultant delay in diagnosis - 46 in every 100 people are work-                             the cost of anti-TNF treatment.
                            of an average of 9 years.           ing (the majority of non-working
participants       1
                                                                participants are retired or not look-
                            - 26 people in every 100 have a     ing or work).
Benefits of
                            close family member who also
Study              2        has AS.                                                   120
                                                                                                                                                 Male     Female
                                                                                      Number of AS individuals

Results of Study   2

NASS               2                      26%
                                                          74%                                                    40


                                                                                                                       20-39    40-59        60-79        80-100
                                                                                                                                    Age groups
                                                                 What are the possible benefits of taking part?
                                                                 We cannot promise the study will help you but the information we get
                                                                 from this study will help improve the treatment of people with AS. We
                                                                 hope that in future results from questionnaires relating to disease se-
     The research is organized by the School of Medicine at
                                                                 verity measures (such as disease activity and functional levels) will be
     Swansea University and being funded by the Medical
     Research Council (MRC)                                      entered into your records held by your rheumatologist. Scores from
                                                                 your existing X-rays or MRI scans can also be entered into the com-
        Contacts:                                                puter system for your rheumatologist to see and use. Therefore, they
        Dr Stefan Siebert, Dr Sinead Brophy
                                                                 can have a more full picture of your AS when you have an appoint-
        and Mrs Liz Irvine
        School of Medicine                                       ment.
        Swansea University
                                                                 What will happen to the results of the research study?
        Dr Sinead Brophy on 01792 602058
        e-mail:                           The findings from the study will be sent to the National Ankylosing
        or Mrs Liz Irvine on 01792 295621                        Spondylitis Society to go in their newsletter. We will send regular sum-
        or e-mail:
                                                                 maries of the findings to you by post with your questionnaires or as
                                                                 quoted on the front page of this Newsletter. Findings will be published
                                                                 on the AS research website. As well as this we will submit findings to
                                                                 be presented at national and international conferences and in peer
                   http://                                       reviewed journals. No participants in the study will be identified in any


National Ankylosing Spondylitis Society (NASS)
The National Ankylosing Spondylitis Society is a national charity providing help and information for people with AS. We have
a range of factsheets and booklets to help patients that we are increasing steadily, whether newly diagnosed or have had AS for a
longer time.

In Spring 2010 we are hoping to hold a regional conference for people with AS with a focus on the issues that patients face in
Wales. More details will follow on our website and our newsletter.

NASS currently has 6 branches in Wales that provide regular hydrotherapy and exercise sessions for members and are supported
by physiotherapists:
                             ABERGAVENNY                                 NEWPORT (GWENT)
                             Mr Martin Cook                              Mr Kelvyn Morris
                             T: (01873) 850 053                          T: (01443) 837 090
                             E:           E:
                             M: 07814 194 271
                             W:                SWANSEA
                                                                         Mr Peter Phillips
                             BANGOR (N WALES)                            T: (01639) 890 063
                             Mr Graham Fitch                             E:
                             T: (01248) 670 778
                             E:              WREXHAM
                             M: 07790 971498                             Mr Peter Smith
                                                                         T: (01691) 662 431
                             CARDIFF                                     E:
                             Su Rosser
                             T: (02920) 754 296

               This is our first AS Newsletter if you have suggestions or information you would like to add
             please do not hesitate to contact Liz Irvine on 01792 295621 or email

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