I don’t know how to stress strongly enough the importance of the upcoming EDS International Symposium in early May (2016)!!!! This is going to be life changing for sufferers all over the world for so many reasons!
The first is that the two biggest EDS support organisations in the world are going to be combining efforts and I think that it is fabulous to see the UK and USA join forces with each other, the European organisations, and the rest of the world (and the many tiny organisations which rarely have their say) and pool their resources like never before, to form a single international organisation woohoo! My understanding is that EDS UK and EDNF will still exist and rightly so, as each country or area of the world still need local support and information, but up until now there has not been one single world body, and worse, there has been so much confusion between the organisations, over terminology and diagnostic criteria that is anything from inconsistent to downright contradictory. One consistent voice will be AMAZING!
Secondly, that voice will not come from one or two professionals in a vacuum. I have been blown away by their care and the lengths that the Symposium organisers have gone to, to ask for, and hear the voices and experiences of sufferers world wide! The use of the internet, with social media, videos, surveys, you name it, they are searching far and wide and asking soooo many questions of each and every sufferer at every corner of the world, to share everything from their personal stories of the actual condition, to the problems that we have had from health professionals, insurance companies, to the ways that we have received the best help, what we wish we (or others) had done differently, … the list seems pretty endless.
But the biggest news of all, is that for the first time in twenty years, the whole condition will be evaluated and turned on it’s head! EDS is such a rare, complicated and up until recently rarely understood condition that it has undergone many confusing changes as knowledge has grown world wide and the differences and similarities between patients have been studied and learnt and the different strains been classified and reclassified too many times to count, by different medical organisations, that different doctors around the globe were taught in different places under different classifications, and so they can’t even agree on many very basic elements of the condition.
But now, the Symposium will change all of that! From their web site:
“The primary goal is to reclassify the diagnostic criteria for all the types of Ehlers-Danlos syndrome. The symposium is also purposed with producing guidelines for medical professionals to use once a diagnosis has been reached as a universal guide for management.
….Updated diagnostic criteria, published in medical journals across the world, will increase and improve diagnosis, and the management guidelines will finally ensure that there is an internationally agreed-on treatment plan that doctors will be unable to ignore. Finally our community will have the foundations we need to ensure more research, funding and recognition.”
This is hugely exciting I think, as twenty years ago when EDS was last classified, it did not roll out world wide, and as EDS was considered so rare, most health professionals have either never heard of it, or even if they have, they know so little. Rheumatology was the area given the task of caring for EDS sufferers and they have failed miserably. Their worlds are filled with many conditions and diseases that they work incredibly hard on helping and researching and so on, but many have never seen a case of EDS and as there is no treatment, these patients have been consistently and systematically brushed under the carpet!
But the combination of the HUGE efforts of a handful of dedicated doctors of all kinds, the EDS support networks around the world, the way that the internet has connected everyone in such an incredible, instant, easy, and user friendly way, and the dedication, humility, hard work, and love of all who have come together to make the EDS International Symposium a reality, is actually incredible. So many times in life we say “I wish someone would do something” but it is way harder than that for people to actually do anything and it requires sooo many “someones” that it is almost impossible. But here the impossible is actually happening! I am soooo excited!!