May is Ehlers-Danlos Awareness month!

Screen Shot 2016-05-30 at 1.18.10 AMFor most of the month of May I have either been away, not had working internet (grrrrr…), or have been otherwise busy taking care of myself and recovering from a rather bad flare, so I have been silent during the month that I really should have been (and wanted to be) the loudest! So in short, this month for us “Eeeds” sufferers has been all about sharing EDS stuff in all kinds of places (by others who were able) but it has also been the month that the Symposium took place in New York (and we can’t wait to hear the outcome which will happen in July at the Global Learning Conference so watch this space!)

The beginning of May and the Symposium also timed in with the creation of the first world EDS group (all other groups before were and still are regional). The Ehlers Danlos Society however has been created by pooling resources from some of the bigger groups and they have been doing a wonderful job of promoting and challenging the world so there is not much point in me repeating everything that they have said so well, especially so late in this month, but hopefully I will be in much better shape and space to promote it better next year! .. but in the mean time, please check them out for all and any EDS info this month!

They also produced this video for us to share this month (and into the future) which is yet another fabulous resource in creating EDS education and awareness. It was quite weird seeing myself on there, I am far from photogenic but when they asked for videos I thought if everyone hid like I usually do then there would be no video!

So I am sorry that this is so pathetically little from me on such an important month but at least I guess I am not missing the month altogether!


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