Ehlers-Danloss Syndrome

I got my diagnosis 4 years ago at the age of 54, it suddenly made sense of so much. I'd given up going to the GP with sprains and twists, my friends got used to picking me after 'one of my falls' and the local MIU decided they didn't need me to return the pair of crutches because they'd only end up giving them back to me.

Cold thank goodness there is more awareness now and a campaign to increase awareness even more - it must have been awful to have suffered for all those years without knowing why.

There are several different types of EDS which result in differing types of disabilities.

I have been diagnosed with EDS but not until I was in my 50s and unfortunately not until I had suffered life-changing injuries as a result of EDS - but it it has been a light-bulb moment that explains a lot of the problems I had in my younger days:
- my strangely stretchy and fragile skin
- problems with scars that failed to heal and that grew wide and papery
- hypermobility and pain in joint/ligaments/muscles- having to tape my ankles because of their tendency to turn through 90 degrees
- ease of injuring the joints/ligaments and muscles - including the "impossible" injury that changed my life
- pain and exhaustion and cogitative problems
- digestive problems IBS
- having to tape my wrist in order to write

So good luck to anyone dealing with these problems

Thanks for highlighting this condition, which I confess I knew little about.
We have auto immune diseases in our family, also a pain but as you and Galen demonstrate, it does help to have a positive approach to life.
As for getting a pasting on the estrangement threads, please don't go because of that. As you have seen the discussions on those threads can be a challenge. I try, not always successfully, to avoid contributing for the reasons you gave.

Thank you for raising awareness, Jayanna. And please don't leave Gransnet. I dare say many of us have felt like walking out at some stage, but most of us are harmless enough and will be supportive. I'm sorry your family has to bear this horrible condition.

jayanna please don't think all threads carry the same level of tension, there are calmer waters. i'm sorry members of your family have had so many challenges. It seems other GN members share your experiences. I hope you can feel supported here.

I have heard of the condition. I met someone on holiday who has this. I wasn't sure of the name. Horrible thing.

I have heard of it but thankfully never come across it. I am sorry that that it has affected you and yours. Don't leave. Feelings run high on the estrangement threads because of the pain they bear. Please don't take it personally. There are other threads and I hope to see you on them.

Thank you for explaining Izabella

A friend's daughter has recently been diagnosed with this, aged 25. She has been really depressed as no one could come up with an answer to her various problems.

downtoearth this is very much NOT the same as double jointed, although joint hyper mobility is part of the picture. EDS is an extremely dibilitating syndrome of several differing types often resulting in early death and is genetically linked through both or one parent and sometimes with no genetic history at all. In early childhood expected milestones are often delayed It is a rare disease of connective tissues with specific facial features too. There is no definitive test for it and diagnosis is by physical examination, family history and ultimately through genetic appraisal.

We think DDiL may have it. She has been to and from the doctor and hospital for over 5 years being told she has hypermobility syndrome and a variety of different types of arthritis, what variety varies from year to year. In the end she got so fed up with her uncertain and constantly changing diagnosis, that she did her own research and came to the conclusion her symptoms fitted this syndrome perfectly, so is off to the doctor to get another referral to the specialist to suggest it. Even a 'no' would be a step forward.

Thankfully, in her case, whatever she has, it has not stopped her having children, but since the diagnosis she and DD have stopped having competitions to see who is the most flexible!

I hadn't heard of this either so thanks for bringing it to our attending sounds awful

Don't disappear because of other posts we all take a pasting sometimes I m thinking

Jayanna Woah there, dont go just because some people are bloody awful, this is your Gransnet as much as anyone else

jayanna would this be the same as a person who is double jointed ...my OH neice suffers from this condition

Jayanna I'm glad you've come back and made us aware of this syndrome. This must be so hard for your family

I will certainly give to research so that more can be found out about Ehlers-Danloss Syndrome.

I first heard about this condition on the Today prog this morning. A couple were suspected of injuring their baby when it was admitted to hospital with "shaken baby syndrome". The mother researched and found the condition by googling it, and the baby was indeed found to have Ehlers-Danloss Syndrome, and they were proved to be totally innocent. How distressing that they had to do the research themselves and it was apparently not diagnosed initially by the hospital.

I was aware of the condition and the limitations imposed on sufferers, think Izzie in Coronation street. I will certainl be donating as medical charities are where my money goes.

Thank you very much for making us aware of this condition. I had not heard of it before. The repercussions of suffering from it are so much more than I imagined. I shall look out for the collecting boxes.

Jayanna I will!

It must be very debilitating. I had heard of ligament laxity, in fact I have that and it does cause some problems (particularly with walking) but had not heard of this syndrome which sounds so very much worse.

I am sorry that it has caused so much distress to members of your family.


Don't be put off posting on other threads.

Fellow EDSer here

Jayanna

Thank you for starting this thread.

I had never heard of this horrid illness and I will most certainly do as you request.

Life is what you make of it!
Most embarrassing dislocation I've had was reaching out in bed to get my kindle and my shoulder popped out. Couldn't replace the dammed thing myself and ended with a night in casualty! Grrrrr! NHS is definitely not what it was!

Jayanne Please don't leave!
you may be able to discuss with others the problems that you and your love ones face

Look what you have achieved with just one Post.
You have already discovered that a least one other on GN is suffering from this awful condition.
And have made others like myself aware.
You have much to contribute to GN
for any upset caused

I have a very close family member who lives her life with a very difficult condition that at this moment can only be managed .
I cannot give details as must respect privacy.
But people can cause much hurt.

Whatever you decision I wish you well

Glad you're having a good time Galen. Not all doom and gloom is it?