EDS UK responds to BSR guidance on problem hypermobility in children

We have responded today, with the HMSA, to the guidance published recently by the British Society of Rheumatology on managing symptomatic hypermobility in children and young people. Having supported families affected by Ehlers-Danlos syndromes and the newly redefined hypermobility spectrum disorders (HSD) for over thirty years, we were disappointed not to have the opportunity to comment on the guidance before it was published. While we welcome all efforts to provide education and support to medical and allied health professionals dealing with hypermobility-related problems in the UK,  we found the guidance to be inaccurate and unhelpful in several areas.

Our response challenges the statement 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. We dispute the belief that difficulties with hypermobility 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 which can then become chronic, often around the time of puberty or after injury.

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 in the guidance do not fully reflect the range which can be seen in this group.

We welcome further discussion and 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.

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