Ehlers-Danloss Syndrome

Yes I know of it through my job visiting an extended family carrying this burden.

Don't be put off GN by a pasting on other threads. It often happens. Try soops kitchen. Many of us seek refuge there and find great kindness and support.

I'm a sufferer as well. It's a right pain. Led me to having my first hip replacement at age 49. I've now had 3.
Generalised OA has led to me being very immobile. But you should see me racing up and down the corridors on a cruise ship on my luggie scooter!

Wow Jayanna , that's a very bitter pill to swallow, none of us knows what other people may be going through as we pass by in the street, I really feel for you & yours &anyone else who is suffering . My grandchild has 4 unusual conditions 3 of which none of us were aware existed . I will have my 50p plus at the ready .good wishes to you all .

Thank,you for brining this to us. What a sad burden to carry in any family, how easily most of us take things for granted.

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

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

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!

Jayanna

Thank you for starting this thread.

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

Fellow EDSer here

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.

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.

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.

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.

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.

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

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

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

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!

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.

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.

Thank you for explaining Izabella

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.

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

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.