Today marks the day where a big dream of mine from two years ago after my first lifesaving neurosurgery, has finally turned into reality…I made a promise to myself and my family that I would do something to ensure that others did not have to suffer in the same way, physically and financially, from a failure to diagnose EDS early. I’m SO excited to share with you all the official launch of our new charity, ‘Mind Body EDS’ 🎉🎗🎉🦓🎉

I couldn’t believe the irony that the launch date of our charity I would find myself, once again, back in hospital in a highly specialised ENT unit being treated for a severe CSF brain fluid leak – but this is the reality of living with EDS, that we are vulnerable to the unexpected at any given time. I also believe this is a special message from above, reminding me that no matter how sick you are, to never lose sight of your dreams because no obstacle is too great to overcome! So please check out our brand new website http://www.mindbodyeds.org.uk , spread the word, and we’d be most grateful for any donations to help support and change the lives of all U.K. EDS sufferers 🦓💛🇬🇧🎗 • Laura Lee • A huge thanks to Andy Blair for helping design our fabulous website! #myedsdiagnosis #mindbodyeds #hope