Ehlers-Danlos syndrome (EDS)

19th May 2015

We always celebrate how special each and every child is at All Saints and really value how we are all different.  One way of celebrating and raising awareness of this was a recent assembly led by the children at the beginning of the summer term.

This month, a child in our school spoke to the whole school in assembly about EDS, which stands for Ehlers-Danlos Syndrome.

What is EDS?

Ehlers-Danlos syndrome (EDS) is a genetic disorder in which the structure of connective tissue is abnormal due to a gene mutation. This results in abnormally fragile and hyper-extensible tissues throughout the body which can lead to a range of multi-systemic symptoms; the effect on the body is widespread and not limited to one body system.

There are different types of the condition and a vast spectrum of symptoms are experienced by our community. Although many lead full and active lives, EDS can lead to physical disability and some rarer types can be life limiting. There is a lack of knowledge about EDS in the medical profession and it is therefore often misdiagnosed or overlooked.

A quote that we thought was particularly brilliant was “Just because you see a smile on my face, doesn’t mean I’m not in pain… It means I’m not willing to let EDS steal my life.’

The reason this is going on the website is because May is Ehlers-Danlos Syndrome Awareness month, and as a school we are supporting this.  Please help us to raise awareness of this condition or pop in and discuss with our children why it is important to us.  Thank you to one family who created a poster to inform others on this syndrome.