Ehlers-Danlos Support UK
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New diagnostic criteria

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For us in UK I would imagine it makes very little difference. For those in USA it might be different.

Now may be the time to get my palpitations checked out - mitral valve prolapse or not? The criterion 2A stuff is very weird, imo, and seem to be heavily focussed on identifying people with Marfan's which I (short, fat) am not.

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oldestnewest does that now mean I now have to refer to my EDS-TYPE 3 as hEDS?

There always changin the names! 😕

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I think so - it will just add to the complications for a while. I am concerned that other well known symptoms such as fatigue, POTS and the gastric stuff has just been wiped off the list as if they don't exist.

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I agree!

I have those too! And they all effect me quite badly, on top of the painful joints etc. X


All those other symptoms haven't been wiped away as if they don't exist, it is just that because they exist in a lot of people that don't have EDS, they can't be included in a nosology for EDS. It doesn't mean that those symptoms should be ignored. We are more than our diagnosis, just because we have EDS doesn't mean to say that everything is caused by EDS when some things might actually be related to something not even related to EDS.


I had an appointment in January.

I felt it was ery rushed and I didn't get to show everything, my skin is very stretchh on my neck and face even though I am thin and do not have much to pull there, it comes away.

I also have a few issues with circulation and what i feel is vascular pain that I did not gt time to explain.

Anyway, shesaid I had HMS and what would have been HEDS, but under the ew guidelines I was not EDS.

Having looked I do fit the new criteria too. However I have decided to just try to move on really. It will make no difference to how I have to treat my body and the treatments Iget. It's more heir research I guess and to be honest I don't see anything they have to offer me (so far as I have seen) will help at all.

I'm really struggling wih my stomach, I did tell the specialist, but it said I was managing it, which the past few months I have not been at all. But nothings to be done.


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