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May is EDS Awareness Month post 2

I will be answering @taylers.danlos.syndrome‘s 31 EDS Awareness Month Challenge questions, inter-cut with photos and EDS titbits. Go back to post 1 to see the 31 questions in full.


***Disclaimer*** Nothing on these posts should be taken as medical advice, I am speaking from personal experience.

Photo taken by @OscarVinter

[#imagedescription a photo of Charlie, a white, cis woman in her twenties with long light brown, straight hair. She is shrugging and smiling, wearing a red jumper and orange dress. She is outside in an apple orchid surrounded by bunting, deck chairs and other people dressed as if for a special occasion, such as a wedding. Across the bottom of the photo is a semi-transparent white banner with writing in black font, 'When were you diagnosed?']


2. When were you diagnosed? I was diagnosed with hypermobile EDS in February 2018 after a lifetime of symptoms and 4 years of very serious illness. Which is actually quite fast compared to some people’s diagnosis story.


For more on my diagnosis story check out this post I wrote for the Mighty last year: https://themighty.com/2018/03/struggles-of-getting-diagnosed/


EDS titbit or tidbit as American's say: The average time of diagnosis in the UK is 10 years, but for many it can take decades. It does not have to be this way, last year Eds UK and the Royal College of General practitioners’ team up to create an EDS toolkit. To aid early diagnosis, if you are diagnosed early you have far better chance of conservative management. Check out the EDS toolkit at: https://www.rcgp.org.uk/clinical-and-research/resources/toolkits/ehlers-danlos-syndromes-toolkit.aspx

If you suspect you have EDS tell your GP about this, if you know any doctors personally make sure they know about this.

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