does anyone know anything about erlers danlos? or hyper mobility?

[DoubleLifeIsALifeHalved]

Have just been told that I probably have it, and that my sister probably died of it. This has come as a horrible shock.

Am freaking out and very scared. What about me? what about my son? what about my poor darling sister who died out of the blue 2 years ago which was was supposed to be 'unexplained'.

She had been horribly horribly ill for years before with various different problems that she had to battle to get anyone to take seriously, and were all life threatening and horrible in the end. She almost died twice, and spent several weeks in a coma... unexpected they said, couldn't have foreseen it... everything that couldn't have foreseen it. But now I get told there is a condition which exactly echoes all of my darling sisters horrible problems, and they could have foreseen it. Its all too horrible.

Consultant couldn't really tell me any more, as he was an osteo surgeon, and apparently I need to see a rheumologist. But it was a rheumatologist who said I needed to see the osteo surgeon...

He also said I have arthritis in my pubic bone. and they could do an injection in there to potentially relieve the pain, but they don't recommend it as its not the only pain I have so doesn't seem to be the main issue. I made a mistake, I told him that pain wasn't as bad as my back pain, but what I meant was that my back pain was cripplingly acutely bad 18 hrs a day, and the pubic bone pain was only acute and sleep chasing away.

So basically, I am in agony, and have been for over a year now, and no one can help me except to tell me I might have some dreadful condition where I drop dead.

oh my God, googled it, feel sick.

Hi, my sister has this condition, and like yours went through hell to get a diagnosis (thankfully whilst living)- took them 20 years or more to work it out

She is effectively disabled - when she's in pain her meds are so strong that she is too fuddled to work, though they do help relieve her pain... she does work when things aren't too bad, luckily she is in an industry that has a lot of contractors, so she contracts when she can, jacks it in when she has a bad episode.

She is in a wheelchair now (on crutches from 23 or so) as her joints are so bad, but she has an adapted flat (well... for the moment- it's social housing, not her own)

Not sure about long-term prognosis (we are not close) - she has been ill since around 18mo- you don't state your age, but I'm guessing you're older than she is. I understand there is genetic testing available, and I may get my children tested at some point in the future, it depends what health concerns they have I guess. She had hypermobility from birth.

Sometimes the back pain and pubic pain doesn't come from the Ehlers Danlos directly but from spinal joint and pelvic joint dysfunction. The dysfunction can be exacerbated by underlying conditions like Ehlers.
You may want to try to try a chiropractor to help with relieving the pain in conjunction with the medical care. I am a chiro here and we often work alongside the doctors to get the best results. In conditions like this we use very gentle techniques to coax the joints to work properly. To find a good one near you go to www.chiropractic-uk.co.uk. Good luck.

I know several people that have Ehlers Danlos Syndrome and Hyermobility Syndrome, but my dh and 7 year old dd both have Marfan Syndrome which is another connective tissue disorder that affects you in similar ways. Have they said to you that it is Vascular EDS that you might have, as there are a few types of EDS and they affect you in different ways. It is the vascular type that is most like Marfan Syndrome.

Please feel free to message me through here if you want to, if I can help in any way.

Hi doublelife, deepbreath told me you were on here asking questions about eds. I know it is hard to do but try not to panic. As you probably realised when you googled there are several types of EDS, and the first thing you need to try and get your head around is which type they think you have. There are genetic tests for some types, but others are dx by clinical examination only (that means by physically manipulating you, xrays scans mris etc) With eds your joints should look physically normal under xray etc, as for all types it is a connecive tissue disorder, not actually a bone disorder. Depending on your type you will have different complications, but many people go on to live happy lives, managing their condition. In my experience, sorry I should have said earlier that I have EDS hypermobile type, as does my ds and my sister, physio is the way to help stabilise your body, and reduce pain, there are different pain management strategies. It is a condition that not many medical professionals are knowledgeable in, or worse they think they are but actually they don't know what they are talking about, but there are a few good support groups out there, I when you feel ready I can direct you to some ones I have found useful.

First things first though, what did your sister actually die from, I know they said unexplained, but if they are now relating that to eds, are they saying it was a vascular failure of some type? This would indicate vascular type eds, which does have hypermobile and painful joints as a symptom. If you want to share some more information I might be able to help point you to some useful advice, or some useful professionals other mners have found. You can come and join us on the eds and hypermobility thread under special needs children, deepbreath and many others are on there, and we will all support you all we can.

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