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Ehlers-Danloss Syndrome

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Jayanna9040 Tue 02-May-17 10:11:14

Not sure Chat is the right forum but Health is so off-putting!
Having received a pasting from the estrangement threads I decided not to post any more but I found out last night that May is Ehlers-Danloss Syndrome Awareness month, so I felt that it was meant that I should make this my last post.

ED is a genetic condition that affects the production of collagen in the body. That doesn't sound too bad but it's symptoms can range from mild stretchy skin to the permanent dislocation of joints and the collapse of vital internal organs.

It has only been diagnosed relatively recently and there is no test to identify carriers, no treatment and no cure.

It was this condition that gave my grandmother and mother their severe disabilities from their early thirties and led to their early deaths. That caused my sister's and daughter's inability to carry babies to term. That caused the death of a grandchild. That has led my sons to the decision that they will not father children that will, at the very least, be carriers of this condition.

I thank you for reading this far. If you see someone shaking a box in the street in this Awareness month please consider dropping in the odd 50p. If they can dislocate their shoulders and pop them back in again that might be me doing one of my party tricks ?
You can find more info on Facebook if you are interested. Thank you.

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Maggiemaybe Wed 03-May-17 00:03:58

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.

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Iam64 Wed 03-May-17 07:38:24

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.

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Cold Wed 03-May-17 22:52:48

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

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Jalima1108 Wed 03-May-17 23:06:09

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.

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kezia Wed 03-May-17 23:27:28

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.

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