What do we do?
We support children who suffer from Perthes disease and Associated conditions.
We Are a Voluntary Organisation!
Our help line receives dozens of phone calls a week from worried and distressed parents in addition to the hundred or so emails, we aim to listen to and support families from the point of diagnosis and through the child’s treatment and into adulthood.
A contact register has been established of people who are willing to speak to newly diagnosed families in their locality and is run within the guide lines of the Data Protection Act .
Information booklets include a Perthes Handbook and Layman’s Guide to Osteochondritis and a booklet on How to Care for your child in an Immobilising Hip Spica Plaster.
The Perthes Handbook and Layman’s Guide and plaster booklet are currently available at £10.00 (Incl. P&P).
We also have a database which enables us to put families 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.
In the past fund raising events have enabled the association to buy such things as Major buggies, wheelchairs and moveable seats, which were loaned entirely free to members. We also bought almost 100 hand propelled trikes which we loaned to children in splints or plaster, to enable them to play with their friends. Over the years treatments have changed and although we still hold some equipment it is not the primary focus of our work any more. We have always had 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. Currently there are a number of research programs taking place and we are supporting these where and when we can as our main aim now is to identify the cause and find a way of preventing it as well as a cure for those already affected.