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Repsonse to BSPR statement 4th March 2020

6 Sept 2019

Joint HMSA and EDS UK Response to the BSPAR Guidance for Management of Symptomatic Hypermobility in Children and Young People

The British Society for Paediatric and Adolescent Rheumatology recently published Guidance for Management of Symptomatic Hypermobility in Children and Young People – A Guide for Professionals managing Children and Young People with this condition. The following is the response from EDS UK and the HMSA to the document, and to the concerns raised by the hypermobile community in response to it.

The Ehlers-Danlos Support UK and the Hypermobility Syndromes Association welcome all efforts to provide guidance and support to medical and allied health professionals seeing adults and children with hypermobility-related problems in the UK.

Much of the published guidance on managing hypermobility related symptoms is in line with our own and we share the aims of enabling children and young people to fully participate in an active and positive life. As such, it is disappointing that our organisations were not asked to participate in the development of this guidance.

We understand and support the importance of not over 'medicalizing' common problems in young people. However, our experience of supporting families for over thirty years shows that many young people experiencing significant hypermobility related problems are not being taken seriously and often deteriorate both physically and mentally as a result.

The published guidance states that hypermobility can be advantageous. This may be the case for a number of people in the general population but it can also cause pain and functional limitations arising from joint instability in others, including in children and young people.

The guidance also states that difficulties occur mainly when the body is weak. This is not our experience. Many hypermobile young people who have been very active suddenly start to experience problems, often around the time of puberty.

Our organisations and others, both in the UK and internationally, involved in supporting the same group, strongly emphasise the need for self-management in hypermobility-related conditions and provide evidence-based information, advice and support to help build this into everyday life.
We challenge the guidance that gastrointestinal and urinary tract symptoms are rare in this group. Insufficient research has been done to make this statement and it is not in line with our experience. Similarly, the other symptoms listed do not fully reflect the range which can be seen in this group. We call for urgent research to better understand the prevalence and causes of hypermobility-related problems in children and young people and to improve their management.

The Ehlers-Danlos Support UK and the Hypermobility Syndromes Association.

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