We have recently heard from many young people in our community and have set-up an Ehlers-Danlos Support UK Facebook group for those aged 13-19 whose lives have been affected by EDS. The group is open to members of EDS UK aged between 13 and 19. The age restriction is due to Facebook rules which state you must be 13 to have an account. Please click here if you would like to join and you or someone in your household is a member of the charity: https://facebook/groups/EDSUKYoungpersons/ Alice Spittles-Jackson is EDS UKs new Young Persons Coordinator who will be helping to manage the group and support those who join. Alice set up EDS Buddies last year to connect those who needed support: EDS Buddies began in July last year one evening when I was feeling particularly isolated and my mind began to wonder what could be done to stop EDS sufferers from feeling as alone as I know they do. Although there are many forums around that I know help people an awful lot, I wanted something on a more personal scale, perhaps something that meant that everyone wouldn’t have to broadcast their life story on the internet. I think we can all agree that EDS is a very daunting and isolating condition, partly because it’s so rare and also because nothing seems to be the same for any two people with EDS. I got diagnosed with EDS when I was 13 and it was such a hard time and I really couldn’t bear the thought of anyone else going through that alone. I felt that I needed to do something, really just to help someone in return for all the advice and support I received on many forums during hard times. I came up with the idea that a Buddy System could work, and even if it didn’t it was worth a try because even if it only helped one person then it would be worthwhile. You can apply for Alice to connect with and EDS buddy online here: bit.ly/1BOLKyF
Posted on: Tue, 16 Dec 2014 18:19:26 +0000
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