If you don’t know much about Ehlers-Danlos syndrome (EDS), or perhaps you’ve never even heard of it, then you’re not the only one.
In fact, many doctors are unfamiliar with it too – and, as a result, it’s seriously under-diagnosed.
“This means people aren’t getting the appropriate advice and support that they need for managing their EDS – and therefore they’re suffering for longer and becoming more ill than they need to be,” explains Lara Bloom, chief operations officer for the charity EDS UK.
Many people with EDS wait years for a diagnosis – as was the case for Bloom, who was diagnosed 11 years ago at the age of 24, despite having been living with symptoms since childhood. This month is EDS Awareness Month, so it’s time to try to change things.
What is EDS?
Two of the main characteristics of EDS are hypermobile ‘over-bendy’ joints, and associated joint pain – though, as Bloom explains, there are a whole host of potential symptoms.
Faulty genes cause collagen – the protein responsible for keeping our connective tissue strong and ‘elastic’, and therefore playing a key role in holding everything together – to become reduced or weakened.
There are different types (including hypermobility EDS, classical EDS, kyphoscoliotic EDS and vascular EDS) and it’s a chronic, life-long condition. But, with the right management, people can live full and active lives.