 | PERTHES ASSOCIATION |
PERTHES ASSOCIATION is an entirely Voluntary Organisation, founded in
Birmingham in 1976. It moved to Guildford in 1991 and became a National
Charity. Patrons of the Association include Barry Cryer, David Kelly and the
late Kevin Lloyd, whom most of you will know as "Tosh" of The Bill. The Association aims to help and advise families of children suffering from
Perthes' disease and Associated conditions in all parts of the British Isles
and abroad. Perthes' disease ( a potentially crippling disease of the hip) is a
form of osteochondritis, which affects 5.5 per 100,000 children (mainly boys)
between the ages of 2 and 15 years; often they are immobilised in various
orthopaedic appliances for approximately 1-2 years, occasionally hip surgery is
necessary, at the very least physical activity is severely restricted. Although Perthes disease, like other forms of osteochondritis is "self
limiting", it can last from 3 - 5 years and the effect on the entire
family can be devastating, coping with the various treatments - e.g. both legs
in plaster of paris, splints, callipers, hospitalisation for traction or even
surgery. Children under the age of 5 have a very good chance of a full
recovery, but it is known that the older the child the less optimistic the
prognosis. Perthes Association's volunteers are 'at the end of the telephone line' for
any worried or distressed parents, and will visit them if possible or put them
in touch with a family living locally. They have Christmas Parties for the
children and outings and events for the whole family, plus fund raising events,
which enable the families to meet and either share their problems or possibly
the solutions to them. They produce a quarterly newsletter, run competitions
for the children, and have a flourishing pen-pal programme. More recently they have introduced a similar programme for the adult members
and have allocated them space to exchange ideas through the newsletter. Membership currently stands at over 1000 families, with over 3,000 families
on our current records. The Association gives advice on practical and financial
help available, and supports any family with a child suffering from Perthes'
disease, or M.E.D. (Multiple Epiphyseal Dysplasia - which is not self-limiting,
and affects many joints), or other forms of Osteochondritis including Severs
disease, Kohler's, Osgood Schlatter's, & Scheuermann's disease. We have
more recently supported families and supplied equipment for children with
C.D.H. (Congenital Dislocation of the hip). This support is available for as
long as it is needed, and although at the age of 18 the children become members
in their own right, they are still able to use all the services available. Family Membership is currently £15 per year for UK residents and
£30 (sterling) for Overseas(1998). WE ARE A VOLUNTARY ORGANISATION! Fund
raising events have enabled the association to buy such things as Major
buggies, wheelchairs and moveable seats, which are loaned entirely free to
members. They have also bought almost 100 hand propelled trikes which they loan to
children in splints or plaster, to enable them to play with their friends.
Currently they are raising money to buy more of these and also additional
reclining wheelchairs for children to use whilst in an immobilising plaster
following surgery. They have a long-term aim to raise sufficient funds to be
able to contribute to research programmes into the cause and possible cure of
Perthes' disease and other forms of osteochondritis. A contact register has been established of families / members who are
willing to speak to new members in their locality and is run within the guide
lines of the Data Protection Act Membership of the Perthes Association entitles
you to a free Handbook and Layman’s Guide to Osteochondritis, plus you
will receive 4 newsletters on a quarterly basis along with access to the
equipment library and helpline. If you do not wish to join the Perthes Association but require further
information the Handbook and Layman’s Guide are currently available at
£7.50 (Incl. P&P). Adults suffering from Multiple Epiphyseal Dysplasia
or from long term effects of Perthes or other forms of osteochondritis are
welcome members of the Association. We currently have a database which enables us to put them in touch with
others who are experiencing difficulties related to their condition. We support
claims for benefits where appropriate and are currently compiling a booklet
specifically for adults.
Perthes Association
42 Woodlands Road
Guildford
GU1 1RW  01483 306637
 01483 503213
 admin@perthes.org.uk
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