Hi

kate_all
kate_all Online Community Member Posts: 7 Listener
Wanted to say hi, I live in the UK and have ehlers danlos syndrome I'm kn mh early 30s and wanted to connect with other disabled people my age 

Comments

  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    Hello and welcome @kate_all thanks for joining and sharing a bit about yourself. I might be missing something, but I'm not sure what you mean by "I'm kn mh"? 

    If you'd like to have a look around, 
    here's a few of the best places to get started:
    • Recent discussions is where you'll find all the latest conversations our members are having
    • The categories page shows all the different topics for discussion
    • The virtual coffee lounge is a place to chat, get to know other members, and play games too
    Please don't hesitate to reach out if you need anything, and I hope you've been enjoying your weekend! :)  
  • kate_all
    kate_all Online Community Member Posts: 7 Listener
    @Alex_Scope haha sorry that's my rubbish typing skills. I'd meant to type I'm in my early 30s 😅
  • kate_all
    kate_all Online Community Member Posts: 7 Listener
    @woodbine :) thankyou and I'm good how are you? I'm not massively sure how to navigate the forums on here so far 
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,538 Championing
    kate_all said:
    @Alex_Scope haha sorry that's my rubbish typing skills. I'd meant to type I'm in my early 30s 😅
    Not a problem, just wanted to check :) 

    Was there somewhere you wanted to find, or something you're wanting to post about @kate_all

  • Jo_2022
    Jo_2022 Online Community Member Posts: 295 Empowering
    Hi @kate_all! Wonderful to see you on the Scope online community! I think you are in the right place and hopefully you meet other similar people to connect with. Also I am in my early 30's too and have had back pain in the past; already something we both have in common. Please do reach out if you have any questions  :)            
  • chiarieds
    chiarieds Online Community Member Posts: 16,682 Championing
    edited January 2023
    Hi @kate_all - & welcome to the community. I also have Ehlers-Danlos Syndrome, & you will find a few of us on here. :)
  • kate_all
    kate_all Online Community Member Posts: 7 Listener
    @Jo_2022 @chiarieds hi both of you ☺️👋 I've been sort of looking to connect to more people who either have my condition or who are young with disabilities because I find it quite isolating sometimes when most of my friends are healthy and don't understand it all. 
  • kate_all
    kate_all Online Community Member Posts: 7 Listener
    @chiarieds

    I have heds pots and mast cell activation and don't know many people irl with these so hi 😊👋
  • chiarieds
    chiarieds Online Community Member Posts: 16,682 Championing
    Yes, it's very difficult when your friends don't understand what it's like @kate_all but here you will find a great understanding. My family are great (shhh giving my age away here) as my children all have hEDS, as do all 3 of my grandchildren. I'm sure you will enjoy this forum with so many people connected by our various disorders. :)
  • chiarieds
    chiarieds Online Community Member Posts: 16,682 Championing
    edited January 2023
    Hi @kate_all - neither my son nor I have sought a diagnosis of PoTS, but we both have problems with orthostatic hypotension, allergy problems ?MCAD, & have Chiari 1 Malformation in our family.
  • L_Volunteer
    L_Volunteer Community Volunteer Adviser, Scope Member Posts: 7,922 Championing

    A warm welcome from me too @kate_all. I don’t have ehlers dannlos syndrome but I am sure many of our community members will share their experiences with you if they do.

    However, I am young (25) and have multiple disabilities – I am autistic and have multiple chronic health conditions.

    I agree that it can be quite isolating sometimes when the people around us don’t understand it. I like to think this is a really supportive space with understanding  :)

  • kate_all
    kate_all Online Community Member Posts: 7 Listener
    @L_Volunteer hi 😊👋 I'm also autistic so I'm happy to have found this space to chat to people