Ehlers-Danlos Syndrome awareness month

May is Ehlers-Danlos Syndrome awareness month. With this being a disability that I unfortunately suffer from, I thought that it was important for me to share this on the blog.

If you’re unfamiliar with what Ehlers-Danlos Syndrome (EDS) is then you can find out more on the NHS page here http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx

I suffer from type 3 EDS. This means that I have chronic pain, my joints dislocate and I suffer from chronic fatigue. For those that have met me, this can often come as a surprise as I do a very good job at hiding my condition. This is probably why I get some very disapproving tuts and mutters when I use my blue badge whilst shopping or running errands.

Awareness around EDS is unfortunately very low. This is what inspired me to write this post and with May being EDS awareness month, now is a better time than any. I was born with EDS however it wasn’t until I was 17 that I got my official diagnosis after many broken bones, days in A&E and doctor appointments. Because of similar more common conditions such as Hypermobility, diagnosing EDS can be difficult and it is due to this that my diagnosis took so long. Because there is little knowledge around the condition, most doctors also don’t understand the condition either. There have been many times that I’ve been in A&E with different dislocations and the doctor/nurse on call has sent me home as they do not understand the condition or know what they can do to help.

This month, I’m encouraging everybody to find out more about EDS and the symptoms surrounding the condition. You may know somebody who also suffers or you may not but the more that we can educate ourselves on these conditions that can sometimes seem invisible, the more open and understanding we can be towards others.

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