The next few posts are for me as much as they are for anyone reading them. The symptoms and repercussions of symptoms and injuries are varied and complicated and people often ask how one gets a diagnosis or what makes it EDS as apposed to simply something else (because you can have EDS and not be bendy and you can be bendy and not have EDS), and it really is quite a minefield to negotiate. So this is about defining as many of the bits that make up this mess as possible, and trying to make sense of the parts in order to understand the whole. And because my whole is slightly different from the next EDS person’s whole, but we both experience so many of the same parts…
The really exciting news is that in May this year the various EDS specialists around the world, as well as the major EDS support network groups around the world, are meeting in New York for a major pow wow to discuss all the cross overs between terminology in different countries, “old” criteria versus “new” criteria, the different diagnostic symptoms as well as the different extra symptoms experienced, protocol on pain control, blah blah blah …. basically all over the world the EDS community is very excited and at the same time we are holding our breath a little. While this is a desperately needed meeting and we are all hoping for huge progress and change, it remains to be seen how far reaching the outcomes will be and what this means for the average EDS sufferer in the far corners of the world. Will they reach a helpful and healthy consensus? (I think they will, there has been so much progress recently and the fact that this is happening is huge!!) Will the information be passed on to Rheumatologists and GPs and physios and Orthopods all over the world? (Maybe??) and if it does get to them will they read it or can they even be bothered with it (sadly this will likely happen in many cases but let’s be positive and think big here!!)
In the mean time, for my own understanding, and because I was diagnosed so vaguely and told that there was nothing that can be done for me, I still don’t know which type I have, what each of the “parts” mean for me and my family, and as so many of the “parts” are apparent in each of my children, where do we go from here in terms of who of them has EDS, who doesn’t, and how do we protect them as much as possible from the ravages of the condition that have affected me so badly and could have been drastically reduced had we known earlier?
Also while May’s meeting will be a huge step forward, it will take time to ripple through to my neck of the woods I am sure, and I don’t have years to wait for an easier, all round test. At the moment I have AMAZING care from my GP but this is all new to her as well and she has hundreds if not thousands of other patients to take care of, and I need to continue to do my own research and be pro active in my own care. So to work through the ENORMOUS amount of information available and try and sort out the “parts” and then get the right tests and specialists for each of the parts, I am hoping that I can get some more clear answers sooner rather than later.
Many people will be making new years resolutions in a couple of days time, but I am simply praying that 2016 for me is a year of answers, clarity, unpacking, and fixing as much of the damage as possible so that I can hopefully start rebuilding some of my strength and getting all the help I need to prop up this old bod for the long haul!!
So watch this space as I unpack each of the “parts” over the next couple of weeks xx