BSW Position Statements

This page explains the position of Bath, North East Somerset, Swindon and Wiltshire Integrated Care Board (BSW ICB) on the terms Hypermobility/Hypermobile Ehlers Danios Syndrome.

Position on term

Joint hypermobility is a common, benign childhood condition. ‘Hyper’ simply means ‘more’ and ‘mobility’ means ‘movement’, therefore it describes joints that can extend beyond their normal range of movement. Ligaments offer stability to joints and when someone is hypermobile their ligaments are stretchier and joints have more flexibility. Hypermobility is a common condition, with some studies suggesting that up to 71% of children under 8 years old and 55% of 4 to 14 year olds experience hypermobile joints (De Inocencio 2004).

Hypermobility is not an illness or a disease, and is considered a normal finding by medical professionals, especially in children who have not yet reached biological maturity.

Hypermobile Ehlers Danios Syndrome

Hypermobile Ehlers Danlos Syndrome (hEDS) is the most common subtype of Ehlers Danlos Syndrome (EDS) and is primarily characterised by joint hypermobility. However, unlike other EDS types which are rare, have a genetic cause, and often involve other organs for example vascular EDS, hypermobile EDS does not usually cause health needs. Hypermobile EDS (hEDS) is usually diagnosed within primary care when an individual meets the 2017 international diagnostic criteria. However, we would not usually expect a diagnosis of hEDS to be given to a child (anyone under the age of 18) or anyone who has not yet reached skeletal maturity, because joint hypermobility is such a common childhood presentation and symptoms will often reduce with age.

ICB would not usually consider joint hypermobility to be a health need in relation to special educational needs. For these reasons it wouldn’t need to be referenced in the health sections of an Education, Health and Care Plan (EHCP), recognising no specialist health or special education provision is required to manage this. Most supportive strategies will be focused on the home and education setting environment which can be delivered through reasonable adjustments, which are universally available to all children and young people.

You can find further information on the Flexible joints webpage.

Position statement

You can read the postion statment below:

• Hypermobility/Hypermobile Ehlers Danios Syndrome position statement (PDF)