February132014
June162013

Oh my gosh. My everything hurts.

*Immediately forced to cancel all plans and stay in bed*

September132012
I got this book today in the post.
So far it is the BEST thing EVER!
Seriously everyone with EDS needs to buy this book.

I got this book today in the post.

So far it is the BEST thing EVER!

Seriously everyone with EDS needs to buy this book.

September72012
June192012
Too true, too true. I’m all over my zebra print clothes right now.

ehlersdanloszebra:

EHLERS DANLOS ZEBRA
TOP: “GO SHOPPING”
BOTTOM:”BUY EVERYTHING IN ZEBRA PRINT”

Too true, too true. I’m all over my zebra print clothes right now.

ehlersdanloszebra:

EHLERS DANLOS ZEBRA

TOP: “GO SHOPPING”

BOTTOM:”BUY EVERYTHING IN ZEBRA PRINT”

May132012
effervescentsky:

ei666shii:

teladnil:

May is Ehlers-Danlos Syndrome Awareness month and Hypermobility syndrome is often* also known as Ehlers-Danlos Syndrome Type 3… so I’m uploading this as part of the event at Zebrasneedzebras on deviantart.
(Used posemaniacs for reference) The red markings roughly mark places where hypermobility syndrome can cause joint pain. They’re loosely based on zebra markings (zebras are often used to represent hypermobility and other ehlers-danlos conditions). I got this image stuck in my mind after a hospital visit last year - I was given a form to fill out which had a small diagram of a human body, and I was told to circle the areas where I experienced pain. I have a mild case of this - my joints never fully dislocate, I rarely experience pain in more than a few places at any time and sometimes there’s no pain at all. There are other symptoms, but typing out all of those would take a while…
Honestly, I always find talking about this to be tricky: If I play down the symptoms, then I’m only adding to the misconception that Hypermobility Syndrome doesn’t cause any ‘real’ problems. …but I don’t want to risk going down the ‘damsel in distress’ route by ranting about every possible problem either.
So.
If you want to know more about the condition, this is my favourite online resource to share at the moment: http://www.dynakids.org/Documents/hypermobility.pdfThe first page gives a good overview for people who don’t have the condition and the rest goes into the kind of detail that people with the condition might appreciate.
Other useful websites:The NHS: http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx http://www.nhs.uk/conditions/Joint-hypermobility/Pages/Introduction.aspx (includes clinical trials)The HMSA: http://www.hypermobility.org/
In my opinion, the best, most comprehensive, useful and affordable source of information about hypermobility syndrome is the <b>Joint Hypermobility Handbook by Brad T. Tinkle, MD, PhD. </b>
tl;dr: EDS-HM sucks. Red lines mark places that sometimes hurt. Distressed damsels only exist in fairytales.
——-*it used to be believed that hypermobility syndrome was a seperate condition, completely unrelated to the hypermobile type of Ehlers-Danlos. A popular and current theory is that two are the same condition, although possibly as different sub-groups. More on that here: http://hypermobile.co.uk/index.php?option=com_content&view=article&id=157&Itemid=37

I read the joint hypermobiliy syndrome and got chills. Everything that I’ve felt in my life is written in this. 

Actually this picture perfectly illustrates my pain areas. I’m affected in everyone one of them. Haven’t had a full dislocation yet, but many partial ones and it hurts like hell. I’m very simply somewhat uncomfortable physically all the time.

At last something that illustrates and explains my pain perfectly….

effervescentsky:

ei666shii:

teladnil:

May is Ehlers-Danlos Syndrome Awareness month and Hypermobility syndrome is often* also known as Ehlers-Danlos Syndrome Type 3… so I’m uploading this as part of the event at Zebrasneedzebras on deviantart.

(Used posemaniacs for reference)
 
The red markings roughly mark places where hypermobility syndrome can cause joint pain. They’re loosely based on zebra markings (zebras are often used to represent hypermobility and other ehlers-danlos conditions).
 
I got this image stuck in my mind after a hospital visit last year - I was given a form to fill out which had a small diagram of a human body, and I was told to circle the areas where I experienced pain.
 
I have a mild case of this - my joints never fully dislocate, I rarely experience pain in more than a few places at any time and sometimes there’s no pain at all. There are other symptoms, but typing out all of those would take a while…

Honestly, I always find talking about this to be tricky: If I play down the symptoms, then I’m only adding to the misconception that Hypermobility Syndrome doesn’t cause any ‘real’ problems. …but I don’t want to risk going down the ‘damsel in distress’ route by ranting about every possible problem either.

So.

If you want to know more about the condition, this is my favourite online resource to share at the moment: http://www.dynakids.org/Documents/hypermobility.pdf
The first page gives a good overview for people who don’t have the condition and the rest goes into the kind of detail that people with the condition might appreciate.

Other useful websites:
The NHS: http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx
 http://www.nhs.uk/conditions/Joint-hypermobility/Pages/Introduction.aspx (includes clinical trials)
The HMSA: http://www.hypermobility.org/

In my opinion, the best, most comprehensive, useful and affordable source of information about hypermobility syndrome is the <b>Joint Hypermobility Handbook by Brad T. Tinkle, MD, PhD. </b>


tl;dr: EDS-HM sucks. Red lines mark places that sometimes hurt. Distressed damsels only exist in fairytales.

——-
*it used to be believed that hypermobility syndrome was a seperate condition, completely unrelated to the hypermobile type of Ehlers-Danlos. A popular and current theory is that two are the same condition, although possibly as different sub-groups. More on that here: http://hypermobile.co.uk/index.php?option=com_content&view=article&id=157&Itemid=37

I read the joint hypermobiliy syndrome and got chills. Everything that I’ve felt in my life is written in this. 

Actually this picture perfectly illustrates my pain areas. I’m affected in everyone one of them. Haven’t had a full dislocation yet, but many partial ones and it hurts like hell. I’m very simply somewhat uncomfortable physically all the time.

At last something that illustrates and explains my pain perfectly….

May12012

I went out last night…

I had a brilliant time… well to start with I did.

But then the bitch kicked in. Next thing I knew I could do nothing but sit there and just try to move my shoulders in time to the music. My hips were giving me agony, my knees, my ankles, my back, even my shoulders and neck hurt.

One of my friends very kindly sat with me until we were leaving, it meant we missed out on a good 2 hours of partying. 

And all because I’ve got this stupid fucking Ehlers-Danlos Syndrome. 

For one night, all I wanted was to forget that although I’m only 20, my body acts like it’s 60+.

What made it all the worse is that the people I was out with, they don’t know about my problem. And I get sick of explaining it. And I get tired of having to acknowledge it as my reality. So they spent those last 2 hours thinking I was just being miserable and grumpy for no reason.
The only reason I was miserable was because of the pain levels. Other than that, I was having a great night.

But my god, I’m sick of my reality. If some one could take this one away and give me one that doesn’t contain EDS, I’d do almost anything…. 

March242012
March142012
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