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Making our invisible, visible - Ehlers-Danlos Syndrome (EDS) awareness month

timoglock Community member Posts: 23 Courageous
May is Ehlers-Danlos Syndrome (EDS) awareness month and today, we chat to Jane about her life with EDS. If you'd like more information, head over to the EDS Support website.

You don’t look ill, you look so young

I am now 54 and I don’t look it. I am not boasting but maybe the only benefit advantage I have of HEDS (Hypermobility Ehlers-Danlos Syndrome) one of the classifications of EDS, is that my skin is thick and soft/velvety.  During my younger years I was involved in several accidents and each time my skin healed amazingly well despite being told that I would be scarred for life.  Unfortunately I did not get advice or support for my joints.  I could always do ‘party tricks’ along with my sister sitting moving our joints backwards.

During my adolescence, I was very flexible and bendy but only fractured my collar bone and wrist when falling down.  In my 20's I was putting on my coat and my whole shoulder joint dislocated moving forward in front of my chin.  I was in shock and couldn’t work out how I couldn’t breathe properly.  After 10 mins of pacing and trying to breathe, I sat down again and the motion moved my shoulder back into place. What a relief.  When I saw  a doctor about 2 weeks later it was my first experience of seeing a professional look at me with disbelief. 

Poster which talks about the possible signs and symptoms of hyper mobility EDS. It says 'please speak to a medical professional for more information. For further details on Ehlers-Danlos Syndrome, please visit our website www.ehlers-danlos.org

This was the first of increasing and continuous subluxations (not full dislocations but uncomfortable), sometimes full dislocations and pain.  After having children I had increasing lower back pain, knee pain, hip pain as if I had no right leg joined to my body for a while until it went back in, ankles giving way, shoulder rotator cuff and torn tendons, adductors torn muscles and hip impingement, chronic trochanter bursitis, itbs, rib slippage and the list goes on. The injuries mainly wax and wane, so when one injury is acute the others sort of go into the mix and then as the acute injury subsides the chronic ones decide they have had enough trying to hold me together and react.  This is totally my perspective of course.

After having my children, one of whom had a learning disability and medical conditions I was full time looking after them.  Unfortunately my marriage ended and I was a single full time Mum and had to find employment, I started studying and ended up with 3 qualifications/degrees.  I wanted to help other parents and children with autism.  I had increasing pain, muscles spasms, sciatica and tiredness but despite checking with the medical doctors was told ‘had I tried stretching?’  

I did everything I could but needed the first 2 knee ops, that was when I was told I was very bendy in the knees but no other advice. Later my knee ligaments gave way but I continued working as I was told others had had my op. with no problems and some people continue to work with only one leg.  I am sure that’s true but not useful for me. 

The issue with seeing medical practitioners who either are not educated in the condition or closed to the conditions is that we are not believed.  After dislocating my ankle and finally getting a referral I was told by one medical professional that ‘it was not possible to do what I did just by walking across a car park with no trauma’.  She also said that we all get aches and pains at my age!  After that I felt no one believed me, I didn’t know anyone with my issues so I thought that maybe everyone does just work with the pain. 

Woman with brown hair - Jane - smiling at camera

In 2010 I was diagnosed with hypermobility but no other help and turned down for any disability payments.  Apart from looking after my children and paying the bills all my money went on private physio, osteopathy and chiropractors and deep tissue massage to help the spasms.  I had to give up any hobbies I had and of course lost my social friends. In my last job I tripped on a pavement and damaged my knee.  My leg swelled up but I had just started a new job so tried to continue on.  I told the employer that I needed reasonable adjustments.  I did not work in the office everyday but around 2-3 days a week and it was a long 21/2 hour commute.  Because both legs were affected I could be limping with a crutch on one side and the next week be using a crutch on the other side and people would comment that ‘had I forgotten I was limping on the other side last week? 

I was diagnosed with chronic fatigue syndrome and fibromyalgia and I found the pain unbearable at the end.  I had to stop working in 2015 and claim PIP.  I was diagnosed with EDS3 now hEDS in 2015 and discharged, also secondary MACD and chronic allergic rhinitis and idiopathic dematographic urticaria, this all has to be managed by primary care who often do not have training in this area.  Late diagnosed with autism in 2016.

During my career I met many people who didn’t understand autism and that was fine as long as they were willing to learn with an open mind, that includes professionals and lay people. What I find unbelievable is the lack of knowledge and willingness to believe in EDS. I think it is shame that perhaps with support earlier on I could have carried on with my career helping others instead of being housebound a lot of the time.   I am volunteering as coordinator for EDS support UK to improve practise, knowledge and understanding.  This involves working with the MSK department, CCG and teaching hospitals, media and social media raising the profile so we are not mis or under diagnosed and receive the right support for life.

Ehlers-Danlos Support UK have three main aims as a charity:

1. To provide support to people affected by EDS 
2. To educate and raise awareness 
3. To support research to improve awareness
This is done through online support, a helpline and support groups across the UK. We aim to educate and raise awareness in both the medical community as well as the general public and we support research to impact diagnosis and treatment for those in the EDS community.  You can see their website here.

Do you have any experience of EDS or hypermobility? Do you have a hidden impairment? If you have any comments or questions, let us know below.



  • anaqi
    anaqi Community member Posts: 52 Courageous
    I have EDS (HEDS).  It took 23 years to get my diagnosis.  I was misdiagnosed with ME,  Chronic Fatigue Syndrome, Reactive Artthritis, Palindromic Rheumatism and Fibromyalgia.  I was getting sicker and more disabled but no one was interested in helping me.  My GP told me she wasn't going to refer me to any more specialists because I'd seen too many people already and she wouldn't keep sending me to consultants until I got what I wanted to hear.  She said whatever syndrom I had was probably so rare it didn't have a name and even if they did find out what it was there would be no treatment other than pain relief.

    I wasn't happy but therr was nothing I could do.  Then completely by accident I learned about EDS.  All three of my children suffered with growing pains, as I had done as a child.  I searched the Internet for ways to help them cope and one article mentioned growing pains being common in people with joint hypermobility syndrome. I didn't know what that was so I looked it up and had a lightbulb moment.  It perfectly described my symptoms.

    I printed out the diagnostic criteria and took it to my GP.  She said she didn't know anything about it but I didn't have it because it was very rare and those people were very poorly and dislocated their joints all the time.  I asked my rheumatologist, he said I had Fibromyalgia but was amazed that I could stand with my knees straight and put my hands flat on the floor, especially given my level of disability as I'd been using a wheelchair for 18 years.  He said ask a physio but she wasn't sure, so I was still left without a diagnosis.

    My health continued to deteriorate. I was admitted to hospital as I kept collapsing when I stood up.  I was eventually diagnosed with POTS and the nurse thought I may have EDS too.  I was refered to the EDS service in Sheffield, which is for complex cases, but I was too complex for them and I was referred to Stanmore, but unfortunately there was a 22 week waiting list.

    I developed severe head and neck pain after attempting to do pilates with a private instructor.  It was so bad that I was prescribed morphine and I could barely get out of bed.  One episode was so severe that I was taken to A&E but they discharged me without treatment because they don't deal with chronic conditions.  I was told to stop taking so many pain killers and get some exercise.  

    I was at breaking point.  I couldn't spend 5 months waiting for an appointment at Stanmore so my parents paid for me to be seen at The Hypermobility Unit in London.   I saw a wonderful doctor and he diagnosed me with EDS.

  • Harri
    Harri Community member Posts: 4 Listener
    I too have hEDS, fibromyalgia, cervical spondylosis and arthritis in my left hip; until August 2010 I was able to manage everything, work full time, be a local councillor, Labour Party NEC and president of TSSA, but then I had a fall due to a badly maintained lift and the house of cards I’d carefully built over thirty years fell down and its been getting worse ever since. Now my hands fail to grasp various items and I need to use voice recognition software, I walk with a crutch but that affects my hand and arm so I tend not to go out much; if I do walk too much without the crutch I have massive spasms that cause blood vessels to pop in my knee and I get spontaneous bruising and the pain that needs morphine/diazepam and a top up of co-codomol. Chronic pain is my daily companion. I am doing a degree in an attempt to upskill so I can work from home as an office job is not now a possibility. I worked as a coach so now I hope to work as a coach/counsellor at a pace that accommodates my hEDS. If you saw me sitting or standing I look fine, and as Jane says one bonus is that I don’t look my age! I am so fed up with having to explain everything because I look OK, nobody sees the scaffold of drugs that keeps me upright!! I am making the transition from having a disability to being disabled, I don’t like it and continue to fight it but I have just got to suck it up and move on. Life is challenging right now but continues to be good. Its good to see EDS being highlighted by Scope - thank you!
  • Andreasuperstar
    Andreasuperstar Community member Posts: 13 Connected
    Hi there, I have just been diagnosed with Hypermobility Spectrum Disorder by the London Hypermobility Clinic.  The classification has recently changed and due to other traits, I potentially would have received a heds diagnosis, but they are very strict now that you must have a relative already diagnosed with it, I don't.  My daughter is extremely hypermobile but I have found the NHS totally lacking in education, expertise, specialism and care.  I personally have spent all my life being dismissed and then diagnosed with fibromyalgia in 2015. The rheumatologist completely dismissed my previous dislocations and hurried my consultation.  Once diagnosed, I was swiftly discharged.  My GP tried twice to re-refer me back due to the hypermobility and possible EDS concerns (by then I had received lots of on-line support and had done research), but the rheumy just refused to see me again.Charming.  I have two independent reports now that detail my hypermobility and impact and my diagnostic letter has a copy of the Beighton Scale assessment attached to it.  Will write more in a second post.  Thank you x
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