Undiagnosed and rare conditions
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.
Concerned about another member's safety or wellbeing? Find out how to let us know.

Introduction - Elhers Danlos Syndrome (EDS)

EnnaEnna Member Posts: 1 Listener
Hi, I'm Enna. 
I have Elhers Danlos Syndrome (EDS).
It is not that we'll known and even doctors, nurses etc don't always know what it is. I've been a wheelchair user for over a decade. I have 6 kids, by God's Grace, three are from my husband's first marriage and three are my birth-kids, one of whom is with God as he came too early to survive due to the high levels of elastaine caused by EDS. My youngest child also came early but by God's Grace he's 3 months old now and thriving. We pray he grows up healthy and happy God-Willing.
I'm looking forward to interacting and connecting with everyone here. I hope we all get on :blush:


  • steve51steve51 Member Posts: 7,175 Disability Gamechanger
    Hi @Enna

    Welcome to our online community !!!!

    It's great to meet you, I look forward to meeting/chatting to you ???

    Please please have a good look around & let me know if I can help in anyway.
  • Sam_AlumniSam_Alumni Scope alumni Posts: 7,729 Disability Gamechanger
    Hi @Enna we have a few members with EDS - you can read a guest post about it here.
    Senior online community officer
  • timoglocktimoglock Member Posts: 27 Courageous
    Hi @Enna You are right that it is not known even in the medical world and we present with injuries without trauma.  I’m on a bit of a mission to improve awareness and most of all ensure we get a medical pathway!

  • flippyflippy Member Posts: 4 Listener
    Hi @Enna I too have eds xx
  • Lucas83Lucas83 Member Posts: 14 Connected
    Hi @Enna I’m currently seeking a diagnosis of EDS, finding it hard to find anyone who knows enough about it to make a competent decision 
  • timoglocktimoglock Member Posts: 27 Courageous
    Hi Lucas83,  I wrote the EDS blog and an area coordinator for EDSUK. The charity has a flow chart on how to get a diagnosis but basically the GP refers you to a rheumatologist and they will hopefully use the new 2017  classifications of EDS or HSD. There are rarer types that can be diagnosed with blood tests.  Hope this helps? Jane
  • Lucas83Lucas83 Member Posts: 14 Connected
    @timoglock that’s great thank you, do you have links to the blog and flow chart? I had a bad experience with a rheumatologist last year, who didn’t believe I even had HSD, despite being diagnosed 4 years earlier and having two operations to stabilise joints, I made me prove it basically and then didn’t examine me and just referred me to a physio, he couldn’t have made it more obvious that he wasn’t interested, so I am feeling very wound up about this appointment, I’m not seeing the same rheumatologist as last time but I suppose I already feel like I’ll just be turned away without any answers. I had never even heard of EDS until 18 months ago and everything fits with it and actually gives me answers to things that have been happening for years. I’m very lucky, my physio specialises in hsd/eds and has been a really good source of information, but she can’t diagnose of course. I am in Scotland and I am hoping there will eventually be a central hub for EDS like there is in London, instead of having to deal with every symptom separately 
  • Lucas83Lucas83 Member Posts: 14 Connected
    I’m also interested in what is picked up by the blood tests on the rarer types to show that a person does or does not have it, I’m fairly sure mine will fall under hEDS though
  • felixfelix Member Posts: 28 Connected
    Hello!! I have JHS/ hEDS along with ME/ CFS and fibromyalgia, PoTS and bowel problems along with a list of other things which are probaboy all related to the hEDS. 

    I'm so glad that there are others like me on the forum!! Yey! 

    F xxx
    felix xx
  • timoglocktimoglock Member Posts: 27 Courageous
    Hi Felix, I know how you feel.  I felt so alone as no one I knew has this and no one believed me. No other disease is so neglected by the medical profession
  • Lucas83Lucas83 Member Posts: 14 Connected
    I got my diagnosis hEDS, Chronic Fatigue, Fibromyalgia and IBS, to go along with my already diagnosed  Neurocardiogenic Syncope and Partial Deafness. So completely relieved I don’t have to fight for it anymore! Have been given access to the Pain Clinic and an OT as well as my Physio and some pain killers to help me manage and steroids for my NCS!!
  • RosiesmumRosiesmum Member Posts: 76 Connected

    The blood tests are usually done when it can be caused by a genetic thing.These are often carried out by the genetics team at St Georges to identify if you are affected as different disorders have not only different traits but different genetic mutations.

    My son has Marfan Syndrome and I too carry the gene but am not as severely affected by it as he is.

    His life was actually saved by another parent who we met at RNOH Stanmore while undergoing spinal surgery.We knew it was something more than scoliosis which was his first diagnosis but she told us to get his heart checked out due to similar facial features/weight issues to her daughter and it sort of snowballed from there!

Sign in or join us to comment.