2021 Professional series

To date thirteen types of EDS have been identified. Despite their common name, each type is a distinct condition caused by a different gene mutation. The most common type is thought to be hypermobile EDS. Its exact prevalence is not known, but along with the related conditions the hypermobility spectrum disorders, it may be common. The other types are rare.

The journey to diagnosis is sometimes a long and convoluted one. Poor awareness of EDS means it frequently goes undiagnosed or is misdiagnosed. Yet diagnosis can inform of the risk of passing the condition on in a family and about prognosis, as well as guide proper management. This section explores how to go about getting assessed for EDS.

EDS cannot be 'cured' but many people learn over time how to control it and live full and active lives.  The day-to-day management of most types of EDS is based around the right kind of exercise, physiotherapy and pacing.

Many other conditions commonly occur alongside hypermobile EDS (hEDS) and hypermobility spectrum disorders (HSD). Although an association has been demonstrated between hEDS/HSD and most of these problems, there is not yet enough scientific evidence to prove that one issue causes the other. This section provides information and advice on living with these comorbidities.

Many children with EDS are 'mild' and their symptoms may go unnoticed, however sometimes children are severely affected. A child with EDS might experience symptoms caused by their joint hypermobility, but many other parts of the body can also be affected, leading to difficulties in school.

In this section you'll find information about the Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) for GPs and other health professionals.

Self-management is a key part of EDS and HSD.  The ability to take responsibility for one’s own well-being can be difficult;  but with guidance and the correct information it can become achievable.