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Our aim is to support self-management of a condition deemed ‘incurable’ and inadequately serviced, to give better support and quality of life for a wide group of patients diagnosed with Ehlers-Danlos Type III (Hypermobility type) and possibly some Classic type BUT NOT (at outset) vascular EDS patients or any other type.
As part of this vision we would like to offer ‘Activity’ groups for children aged 5-16years. Physiotherapy, if offered, is time limited and many children are then expected to go on and join main stream sports clubs to continue their activity. Children with this condition often need to increase muscle strength to support lax joints, improve stamina in order to keep up with peers and have balance/co-ordination issues and gross motor skill delay. This means that children often lack confidence and basic skills to be ready for main stream clubs. Our aim is to provide a weekly activity group to provide consistent activity, a supportive environment to develop muscle strength, core strength and basic skills. Each child will be individually assessed and evaluated to track their progress. We also plan to link up with local sports clubs so that when the child feels ready and if they have an interest in a particular sport we plan to offer a handover, educating the club and supporting the child in the transition.