Hi, my name is Bkelly93! — Scope | Disability forum
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Hi, my name is Bkelly93!

Bkelly93 Member Posts: 2 Listener
Hey, coming up to a year since my EDS diagnosis, finding things have been getting worse since the birth of my son in 2016. Would be nice to find some people near me that would be up for coffee meets and just chat. 


  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Hi @Bkelly93 - Welcome to the community; pleased you've joined us all. May I share a virtual cup of coffee with you as I have the hypermobile type of EDS, & we could compare notes! These sons do cause bother don't they? Mine was a brow presentation & caused trouble with my joints. I didn't have a hEDS diagnosis then, that didn't come until he was 16!
    For now I'm sure others will come & introduce themselves. There's quite a lot of us here with EDS.
    Hope you enjoy having a look around the site & please join in any discussion you wish.
  • Bkelly93
    Bkelly93 Member Posts: 2 Listener
    @chiarieds thank you :) i also have hEDS. I was lucky enough to have a normal birth with retained membranes resulting in sepsis being the only issues. But I think the hormonal changes that come with pregnancy have exacerbated my issues and made it a lot worse. My mobility has gone downhill and I find it more and more difficult to do lots. Thanking you muchly for the virtual coffee, much appreciated :) my social life is close to nil sadly. 
  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Hi, should also have mentioned I don't know if you've joined our UK support group for those with EDS. See: https://www.ehlers-danlos.org/ It's free to become a member, & there are regional support groups too, where members meet up; in my area it's once a month. See: https://www.ehlers-danlos.org/support/support-groups/ for what's available local to you, if you're interested in meeting other EDSers.

  • chiarieds
    chiarieds Community Co-Production Group Posts: 10,614 Disability Gamechanger
    Oh, we were both replying at the same time! I had similar problems with our first daughter unfortunately. I shouldn't be here by all accounts, but lived to tell the tale. You're quite right about hormonal changes; relaxin 'relaxes' already unstable joints rather too much. I'm sorry you've felt worse since your son's birth; I managed to stay 'reasonable' until I hit 40.
    I'm here most days, & there are some lovely friendly people here too willing to chat. I know it's not the same, but it can help just to chat here sometimes. I'm very pleased to 'meet' you & at least we didn't have to wait long for our first cuppa.
  • Adrian_Scope
    Adrian_Scope Posts: 8,106

    Scope community team

    Great to have you with us @Bkelly93. Welcome to the community. :smile:
    Community Manager

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