Being believed and getting a diagnosis of EDS

Sadly, many people experience a lot of suffering before they are actually diagnosed with Ehlers-Danlos Syndrome.  

Some of the classifications are picked up from a very young age because the symptoms cause life-threatening complications which are present in babies and young children.  As hypermobility is relatively common in children - with many never going on to develop problems - children and their families can often be told that it’s normal, and that their child will ‘grow out of it’.  Sometimes they do, sometimes they don’t.  Sometimes it’s just a case of a bendy joint, but sometimes it can be much more than that.

In my own experience, I was told I had growing pains even into my late-teens and early 20’s.  I never really thought to question it at the time, and nor did my parents.  Herein lies an unanswerable question - if I had an earlier diagnosis, would it have affected how active I was and therefore how strong my muscles were?   I don’t know.  

Hypermobility can affect so much of the human body that inevitably it can cause difficulties for children.