Ehlers-Danlos Awareness Project (EDAP)

Welcome to the Ehlers-Danlos Awareness Project (EDAP) web page! Thank you for visiting our site!  The purpose of EDAP is to educate and raise awareness for Ehlers-Danlos Syndrome.  Ehlers-Danlos Syndrome is a rarely diagnosed genetic connective tissue disorder where the collagen does not fully synthesize, making it weak.  Collagen is located in the skin, joints, ligaments, tendons, blood vessels, and organ walls. Faultiness of the collagen can lead to numerous other medical conditions and results in widespread pain. Those diagnosed with Ehlers-Danlos are known as "medical zebras".  

Zebra Aphorism-

      Wondering what the meaning of the Zebra is to the EDS community? You are not alone!  It comes from the saying "If you hear hoof-beats, assume a horse, not a zebra." In the medical communtiy, this saying is used in terms of diagnosing someone with a rare condition, disease, or disorder.  It has been adopted into the EDS community as the "mascot".

 

Don't forget to sign the guestbook!

Visit us on Facebook under "You Know You Have EDS When" and on instagram @uknowuhaveedswhen for funny & inspirational photos in addition to support for EDSer's! 


If you would like to have your EDS related blog, site, or Facebook page listed in our "ZebraPages" directory, please message us here or on our FB Page "You Know You Have EDS When"!  We would love to add you!

 

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Sophie | Reply 05.02.2014 06.59

Sophie and I am 14 years old! I have EDS( type 3) .It's frustrating on the things I can't do like normal kids. But I look at the + not -. I was diagnosed at 5.

crackerjack_46@hotmail.com | Reply 22.11.2013 07.11

Our precious grandbabies have EDS, and we worry about them, but they are doing good, and so beautiful! One is six years, and the twins are three! We pray daily!

Cat | Reply 21.11.2013 18.14

I have EDS Hyper and I am 41yrs old and now can not work. My EDS has just started to progress fast in the last two years.

Born Bendy 22.11.2013 09.39

I'm exactly the same as you, been off work since over a yr & has just ended.

Sherrilee | Reply 21.11.2013 17.53

Hi - I have type 3 ... I live in Australia

Fabi | Reply 21.11.2013 15.00

Keep up with the good work!

Dan B (UK) | Reply 21.11.2013 13.36

Great website - I'm 28 M EDS type 3..I live in Wakefield UK. EDS is harder to deal with because of a lack of support - this page is great. I can help if needed.

Lauren | Reply 20.11.2013 22.59

Hi! I'm a type 1 & 3, 30/f EDSer! Keep fighting. Know this cold time of year is hard and painful. Drink that hot tea, epsom baths, heating pads! Socks!

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Latest comments

16.02 | 23:46

oooh im soooo happy to read that youll be adopting :) really great decision! :) instead of potentially ruining several lives, you're saving one! :) take care :)

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05.02 | 06:59

Sophie and I am 14 years old! I have EDS( type 3) .It's frustrating on the things I can't do like normal kids. But I look at the + not -. I was diagnosed at 5.

...
22.11 | 09:39

I'm exactly the same as you, been off work since over a yr & has just ended.

...
22.11 | 07:11

Our precious grandbabies have EDS, and we worry about them, but they are doing good, and so beautiful! One is six years, and the twins are three! We pray daily!

...
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