Hi

kate_all

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 

Alex_Alumni

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

@Alex_Scope haha sorry that's my rubbish typing skills. I'd meant to type I'm in my early 30s 😅

kate_all

@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

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

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

Hi @kate_all - & welcome to the community. I also have Ehlers-Danlos Syndrome, & you will find a few of us on here.

kate_all

@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

@chiarieds

I have heds pots and mast cell activation and don't know many people irl with these so hi 😊👋

chiarieds

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

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

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

@L_Volunteer hi 😊👋 I'm also autistic so I'm happy to have found this space to chat to people