 | THE MARFAN ASSOCIATION UK |
Patron: Sir John Gielgud
Chairman / Support co-ordinator: Mrs Diane L. Rust (Co-founder) The Marfan Association UK exists to support those suffering from the
syndrome and their families. This is particularly necessary when a patient is
first diagnosed, as Marfan Syndrome is often something of which they have never
heard. As the condition is hereditary in 75% of the cases, other members of the
family must be tested, which often results in further diagnoses of Marfan. The support needed by the whole family at this time, to help them through
the trauma, is one of the most important aims of the Association. Support,
help, and advice is available both through the central office and the 58
support points throughout the UK and Eire, who are willing to listen and help
Marfan sufferers in their locality (a support network list is available -
please send s.a.e.). Education We inform both lay and medical persons so that they are more able to
recognise the various physical problems which make up the Marfan Syndrome. We
are contacting the schools who have children with Marfan Syndrome. Depending on
the intensity of the condition, these children have many problems in school
because of their excessive height, poor eyesight and, if they also have a heart
problem, their inability to take part in some sports. This makes the child with
Marfan Syndrome feel "different" and he/she is often subject to
hurtful remarks and bullying. Unfortunately, members of a family are sometimes unable to accept that their
child has Marfan Syndrome and they allow him/her to continue with a normal
lifestyle, with possible life-threatening results. Through education, we try to
prevent unnecessary loss of life. We have produced booklets for teenagers,
children and teachers, plus pamphlets for dentists, optometrists and
chiropodists, and are currently working on a question and answer booklet as our
next project. A list of publications is available, together with a clinical
guide for physicians (please send an s.a.e.). Research There have been some wonderful and dramatic breakthroughs in research, both
in the United Kingdom and abroad and we are continually supporting research in
all its many and varied roles. We hope for improved medical and surgical treatment which will ensure a
better life for Marfan patients worldwide. Worldwide We co-operate with Marfan Associations throughout the world, and our
chairman and support co-ordinator has been instrumental in setting up the
European Marfan Support Network, at present comprising 12 countries, to bring
together those with the same problems. Our chairman is also a member of the founding committee of the International
Federation of Marfan Syndrome Organisations. We feel this is an essential area
of our work which enables us to ensure that our members benefit from any
headway being achieved.
Marfan Association UK
Rochester House
5 Aldershot Road
Fleet
Hants
GU13 9NG  01252 810472
 01252 810 473
Answerphone: 01252 617 320
 http://www.thenet.co.uk/~marfan/
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