MAY Is EDS Awareness Month!

The month of May is EDS Awareness Month for all 13 types of Ehlers-Danlos Syndrome. This year, EDS UK are focusing the awareness month campaign on “Time To Diagnosis”.

To help raise awareness of the Ehlers-Danlos syndromes and hypermobility spectrum disorders this May, help us to highlight how long it takes to get a diagnosis. Share your #timetodiagnosis image!
For many people the journey to a diagnosis of EDS, has been a long and challenging road. Poor awareness of the condition amongst medical professionals, means that it can go undiagnosed for many years, with patients often being misdiagnosed with other conditions.
How long did it take to receive your diagnosis, from the first appointment with your GP, until an official diagnosis?


EDS UK, are asking their members to share a selfie, that includes the length of time it took to get their official diagnosis. The charity, is reminding members to “Please refrain from ‘party tricks’ or extending your joints more than necessary”, during this awareness campaign.

If you are have Ehlers-Danlos Syndrome, you can upload your selfie here: Please share your selfie on social media with the hashtag #timetodiagnosis and help us spread the word for awareness month!

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Ella Hollis

Trying to find normality amongst multiple chronic illnesses.

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