As promised every blog post on a Monday throughout May 2014 will be about EDS to raise awareness of the condition or to simply help fellow sufferers. Over the last few weeks I have received a few questions / comments on www.themyastheniakid.com and www.themyastheniakid.blogspot.co.uk asking for further information regarding the different types of EDS after people had read
If you think you have Ehlers Danlos Syndrome / (wordpress blog version of the same post) this has been one of my all time most popular posts and after all this time weekly can receive more views than my new posts combined, so clearly there is a need for this information.
I am not a doctor nor an expert on EDS and I can only provide links to information sources or tell you about my own personal experiences. I have had to reach out to my friends in the EDS community to pool some information together and my eternal thanks must go to Anna who has helped no end putting this post together.
Firstly I wanted to provide a link which explains the different types of EDS. ehlers-danlos.org provides a quite easily understood outline of the different types of EDS, their symptoms, how they are tested for and the way that they are inherited. Sometimes I find sites provide too much information for the “beginner”, I get lost as soon as they start talking about genetics my brain just can’t cope with it. This site explains it as simply as possible which is good for when I have those information overload issues!
My blog mainly focuses on my “flavour” of EDS which is hypermobility. I do have friends with Classical EDS but I can only write from my own perspective of how it affects my own health as each type of EDS can present with its own unique symptoms. As I have stated in previous posts EDS is a syndrome so people are affected differently, no two EDS patients are the same. So the blog is very much my own personal story and can not be claimed to represent the whole HEDS / EDS community.
Having spent a while researching good sites / articles for EDS I came across this piece of advice on ehlers-danlos.org How to prepare for your doctors appointment . This takes you through step by step on preparing a medical history and how to approach the subject with your doctor. Many doctors seem to be working under the impression that EDS is extremely rare – it’s not that rare its just under diagnosed and that all cases of EDS are picked up in childhood ( again not true!). Having lurked on forums and from my own personal experience many of us are diagnosed in our 30’s and 40’s (my dad was diagnosed after me at the age of 61!) after years of being fobbed off and being told that we are suffering with anxiety, somatisation disorder or are just reading too much on the internet.
I think a lot of the problem in the UK is that health professionals work in isolation. As a child had my dentist and doctor spoken to each other red flags would have been raised (as I showed clear dental signs of EDS and my constant complaints of leg pain to my GP), they may have seen the bigger picture. By the health care professionals working in isolation it meant I spent many years thinking it was my unique problem and there was no name for it.
I have found this link thanks to Anna EDS information it is the most comprehensive journal article that I have ever found and if you believe you suffer from EDS or have the EDS diagnosis I sincerely recommend that you print this article out (perhaps lose all the references as its 23 pages long in total!) and keep it, to shove under the noses of any doctors that you come across. I have had my diagnosis since 2011 but I have found information out that I had no clue related to EDS! It is an absolute gem of an article and one that I will read and reread because each time I do something else pops out at me!
I have never done this before with any blog post but this post is being dedicated to Skye in Australia who was the inspiration behind this post and told me her story. Her questions also pointed to the need for my blog to contain more information about EDS that would be useful to those searching for a diagnosis and those already diagnosed.
EDS is a multi-system syndrome and needs to be treated as such rather than just being seen as flexible joints and pain! Our doctors need to be educated about it and so do we, otherwise how can we be our own health advocates?