Ehlers-Danlos Syndrome Awareness Month on May, 2018: Danlos Syndrome Awareness Month - Who is aware of Ehlers Danlos Syndrome?

May, 2018 is Ehlers-Danlos Syndrome Awareness Month 2018. Affected by Ehlers-Danlos‎ Share, discuss & learn from others living with Ehlers-Danlos syndrome

Who is aware of Ehlers Danlos Syndrome?

I'm a doctor. I'm aware of Ehlers Danlos Syndrome (EDS). It's due to abnormalities in collagen. You say that "many people have EDS". The overall frequency of the condition in the UK is 1/150,000.

The symptoms of the EDS type 1 can be pretty serious and if you have it you'll probably know. Other EDS types are milder and more difficult to diagnose.

It's good that there is a EDS awareness month, but as with most diseases that are relatively rare, publicity is poor unless there is someone famous to promote it.

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Do you know anything about Ehlers Danlos syndrome and its sub-types?

Do you know anything about Ehlers Danlos syndrome and its sub-types?

Yes, lots but I hadn't heard about it before my niece got diagnosed. There is a group of about 30 people in our localish area that get together that either have it or their children do (generally it's both).

My niece has either type 1 or 2, I forget which but it's the type with both the skin and the hypermobility.

I've been told I have hypermobility but it's hard to distinguish between EDS and just being hypermobile so I really don't know if I've got EDS type 3 (I think that's the hypermobile type) or not. Either way there are a lot of similarities.

Most people know hypermobile people but refer to them as being 'double jointed' but what annoys me is when I say my knee troubles have been caused by the hypermobility (my knees go a bit backwards, despite all my muscle tone and my physio told be the hypermobility is the cause of the issue) some people will try and convince me that I'd just flexible and it isn't actually an issue at all.

I guess I have to be thankful I don't have it as bad as some do (my niece gets tired very easily and because of that and her really delicate skin she doesn't get to participate in sports). I'm only 19 though so I'm concerned about the future (pain, arthritis, not carry babies to term, dislocation).

Edit: Just going to add that about 6 months ago I had no idea that there was a reason I suck with fine motor skills and got in trouble for the way I held my flute and my pencil grip. I had no idea my knees went backwards at all and I thought everyone's thumb could touch their forearm. My boyfriend thought I was weak because I like to hold a saucepan with both hands just in case my wrist randomly gives way again.

POTS HELP AND SUPPORT PLEASE?

POTS HELP AND SUPPORT PLEASE?

Hi Hannah, Did you know there's a support group for EDS (the forum is broken at the moment though), and it's EDS Awareness Month in May with some special events on?

Also in that document you'll see at least one Twitter link

Hang on in though, here, as indeed someone might pop along who's able to natter. Maybe set your email options so people can message you directly for a while? Go to

and click on the Privacy tab.

:-)

Agoda
Holidays also on this date Tuesday, May 1, 2018...