#ZebrasNeedZebras

Ehlers-Danlos and Hypermobility

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Group Info Group Founded 1 Year ago

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by *Ogrefairy

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Group Info

ZNZ is a group dedicated to those with EDS (Ehlers-Danlos Syndrome ) and HS (Hypermobility Syndrome) and the loved ones surrounding them. It's a group founded to give a place for the ones suffering this syndrome to come together in hopes of finding support, make new friends, and express their personal stories. ZNZ is a group also dedicated to the curious, giving significant information to spread awareness of EDS to an otherwise unknowing populous.

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Founded 1 Year ago
Nov 21, 2011

Location
Global

Group Focus
Support & Cause

90 Members
90 Watchers
3,484 Pageviews

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What is EDS?

Ehlers-Danlos Syndrome is a group of genetic, invisible, connective tissue disorders. This means that even though sufferers look perfectly fine, they are actually dealing with chronic pain and injuries. EDS is caused by a deformity in the gene that promotes the production of collagen, or the "glue" of the human body, affecting skin, tendons, joints, and organs. The amount and severity a person is effected varies completely person to person.
Hypermobility Syndrome or Hypermobility type EDS is the most common type with symptoms of being able to hyperextend most joints in your body, dislocations, subluxations, sprains, strains, chronic pain in joints, fatigue, weakness, and lack of coordination.
For other types of EDS on top of all of those other problems there can be very stretchy, velvety skin that tears (classical type) or risk of organ rupture (vascular type) and those are just the three most common types.

There is no cure and very little treatment for EDS as it is under researched and underdiagnosed.

Why the zebra?

Medical students are taught to never assume that symptoms could mean a rare disease or disorder. In their words:
"When you hear hoof-beats think horses, not zebras." We are medical zebras.

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Featured

Zebras need Zebras Logo by *Ogrefairy

Featured

EDS Stories

EDS Story by *Ogrefairy

What EDS is to meI thought I was weak.

I didn't understand when I was a child. I didn't know why I was weaker than everyone else. Why I was so clumsy. Why I couldn't run like everyone else. You see, I thought that everyone felt pain through their joints when they ran. That's why I didn't understand why I was the only one who gave up. I thought I was weak. I hid my crying and I hid the injuries when I fell. I can't tell you when I first started getting injuries because I was too stubborn and embarrassed. My mom blames herself a lot because she didn't see and I didn't come to her. It's not her fault though. I just had this idea in my head that I was weak and IWhat EDS is to me by *Ogrefairy

IntroductionI once had pure energy, to run all day long;
Had the strength to tumble, and to dance to a song.
I had been described as attention-seeking;
Yet, enigmatically shy, and hardly speaking.

I've never fitted neatly into one defined box,
And I was always the kid with the holes in her socks.
I had independence then, was free to pave my own way;
But these privileges, here, were not destined to stay.

My paved road took a turn up a steep rocky hill,
As I became the girl who was constantly ill.
Forever being injured, it felt like a curse!
I thought it was hard then, but with age, it got worse.

Now, I'm a woman – still smart and still sIntroduction by *Amazinadrielle

Life with EDS Collage by *Amazinadrielle

EDS Stories

Gallery

One of the faces of Ehler Danlos Syndrome by ~spurvungen

He Never Gives Up by ~CheshireVirus3

Wooden doll by ~BendyDivine

Zebra Stars- No Need For Tear's(Paint.Net) by ~DoushinjiLuv

Gallery

Inspirational

Hope by ~iMais

I Won't Give Up by ~Insaneymaney

Look UpThe pain never goes.
Life is different now.
It's never quite what you expect,
But this is a total flip.

It's not what I wanted,
Not what I'd planned,
But I have found new things,
I am making new plans.

I don't know what I want now,
But I think I might
Just enjoy finding out
What lies ahead.

I can let the past go now.
What's done is done.
I hold my head high
As I look up and to the future.Look Up by ~EvilChocolate46

Hope GIF by ~CheshireVirus3

Inspirational

Just some Zebras

It's a zebra by ~CANADlANBACON

Zebra by ~CANADlANBACON

Zebra toy by ~EvilChocolate46

chibi girl and zebra by ~naniloke

Just some Zebras

Quotes

1-13-12 by *Ogrefairy

dare to dream. by ~this-is-the-life2905

Churchill Quote by =kiddomerriweather

Live. Laugh. Love by ~xzoeamberx

Quotes

My Fovorite Work

Burton inspired painting. by ~BendyDivine

Peacock Cross-stitch by ~EvilChocolate46

Ruki, The Decade by ~CheshireVirus3

Serene by *PassionateSketcher

My Fovorite Work

EDS Awareness Month

May is EDS Awareness Month by ~aliwelles

May EDS Awareness Month (Paint.net) Your not alone by ~DoushinjiLuv

EDS Awareness Sign by *Ogrefairy

May Awareness Avatar by *Amazinadrielle

EDS Awareness Month

Random from Favourites

The Face of Ehlers Danlos by ~aliwelles

1 Comment

Help find a Cure for EDS by ~Insaneymaney

2 Comments

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Affiliates

BensFriends.org: New Stand-Alone Community for EDS

by ~Arinai, May 1, 2013, 7:02:03 PM
Journals / Personal

Hello everyone, I am one of your admins, ~Arinai. I am pleased to announce that a new support group site, in conjunction with Ben's Friends, has gone live starting yesterday.

BensFriends.org serves as an incubator for communities who do not have enough members to start a new site. Until recently the Ehlers-Danlos community at BensFriends.org did not have many members. Now that the size of the community has increased, Ben has created a stand-alone site for the EDS community.

For those of you who would like to, you may visit the new site at EhlersDanlosSyndromeSupport.org.

For more information on BensFriends.org, please visit BensFriends.org or watch BensFriends.org - Rare Disease Patient Communities on YouTube.

8 Comments

More Journal Entries

Recent Journal Entries

May 1, 2013 BensFriends.org: New Stand-Alone Community for EDS
Mar 15, 2013 Hello!
Jan 16, 2013 Active Discussion: Coping Mechanisms
Jan 1, 2013 Happy New Year, You Lovely Zebras
Dec 15, 2012 Support Sandy Hook
Nov 9, 2012 Ring Splints
Oct 21, 2012 EDS Has a Mind of its Own
Oct 19, 2012 Spirit Day
Sep 13, 2012 What is it that keeps you going?
Aug 30, 2012 A Leave of Absence

Comments

~darkDIMENTIObender34 Apr 19, 2013 Hobbyist General Artist

Wow, I had no idea there was a group dedicated to people like us! This is so awesome!

*Ogrefairy Apr 23, 2013 Hobbyist Digital Artist

Welcome to the group! It's been a little inactive lately but do not hesitate to submit any work that you feel fits! I'll try to get things more active again soon. Let me know if there is anything I can do to make this place better for you!

~darkDIMENTIObender34 Apr 23, 2013 Hobbyist General Artist

Thank you so much! <3

*Ogrefairy Apr 23, 2013 Hobbyist Digital Artist

You're welcome!

~naniloke Dec 29, 2012 Hobbyist Traditional Artist

thanks for letting me submit my work here

*Ogrefairy Dec 31, 2012 Hobbyist Digital Artist

~Arinai Dec 29, 2012 Hobbyist Traditional Artist

You're welcome.

*XilaPhoenixArt Sep 17, 2012 Hobbyist Digital Artist

Thank you for the request, I feel honored! <3

*Ogrefairy Sep 18, 2012 Hobbyist Digital Artist

Thank you for agreeing to submit your work. It means a lot!

*XilaPhoenixArt Sep 19, 2012 Hobbyist Digital Artist

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