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Group Info Group Founded 5 Years ago Statistics 107 Members
8,353 Pageviews101 Watchers

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.
Group
Founded 5 Years ago
Nov 21, 2011

Location
Global

Group Focus
Support & Cause

107 Members
101 Watchers
8,353 Pageviews
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:iconogrefairy:

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:iconeggod:

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What is EDS?

:work:
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.

:bulletblack::bulletwhite:Why the zebra? :bulletwhite::bulletblack:
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.
Zebra by Amazinadrielle It's May again Zebra 2 by Amazinadrielle
and you know what that means!



I know that this group isn't very active. I've been struggling with a lot of illness these past few years. But I would love it if this month everyone submitted their EDS related artwork in honor of this month and spreading awareness for this horrible condition that plagues us.

And notice for all members, especially new ones. You can send me a note any time. If you post a message on the group here I might not see it thanks to the fact that DA does not give me an alert about those for whatever reason. But if you send me a note, I promise that I will respond. I am on DA almost daily and will always do my best to answer your questions or just be here for you as a friend who knows what this struggle is like and who can be here for you.

Take care, all of you. Sending lots of love, spoons, and zebra pride,
Ogrefairy
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:iconxtreamxboxer:
xtreamxboxer Featured By Owner Mar 8, 2015
Hi it's me again, I have another question. Yesterday my hand started hurting and a minute later my arm swelled up and is in excruciating pain and all the doctors told me to do was to take pain killers even tho they hardly work. I was just sitting watching tv when my arm suddenly felt like a bomb went off inside. It happened in my drawing arm so I can't destract myself with art or games and my friends haven't been much help. I want to know how to handle the fear I have of what other things may detonate in the future since this has never happened before?
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:iconogrefairy:
Ogrefairy Featured By Owner Apr 30, 2015   Digital Artist
Oh no. I am so, so sorry that I didn't answer this before. I have been very ill for the past while and haven't been checking this group properly. For some reason comments don't come up in my main message center. Please sent me a note next time you want to talk. I for horrible. This is almost two months since you sent this message. =(

I hope that your arm is doing okay now. Goodness. Were you able to get help. It definitely sounds like an injury. Was it is the hand or the wrist or both?

Again I am so sorry.
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:iconnoratheexplorer96:
noratheexplorer96 Featured By Owner Aug 4, 2014
Thank you for adding my etching to your gallery, I will definitely show my sister this page
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:iconogrefairy:
Ogrefairy Featured By Owner Aug 6, 2014   Digital Artist
That's wonderful! Let us know if there is anything more we can do.
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:icondaddyhoggy:
DaddyHoggy Featured By Owner Aug 3, 2014
Hi Maddy thanks for including the image of my youngest - so far, apart from when she falls over and dislocates her shoulder(s) - my daughter is mostly pain free - except that she complains first thing some mornings that her knees and ankles ache - but they're sometimes not pointing the way they "should be" when I wake her up...

On several photographs it looks like her head is on the wrong way round...

daddyhoggy.deviantart.com/art/…
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:iconogrefairy:
Ogrefairy Featured By Owner Aug 6, 2014   Digital Artist
Aw. You have a lovely daughter. I'm so sorry that she also suffers from this condition. Please feel free to add anything you would like to this gallery and to ask any questions you would like from us.
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:icondaddyhoggy:
DaddyHoggy Featured By Owner Aug 6, 2014
Thank you. I know in the future we face a world of potential problems, but we always hope for improved treatments along the way (and so far other than her occasional dislocations we seem to be mostly OK. )
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:iconogrefairy:
Ogrefairy Featured By Owner Aug 8, 2014   Digital Artist
It sounds like she has a fantastic father supporting and helping her through this. =) Let me know if there is every anything more I can do to help or answer questions
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(1 Reply)
:iconxtreamxboxer:
xtreamxboxer Featured By Owner Feb 25, 2014
I was wondering if any other eds sufferers have any advice on how to handle the emotional side of it. I'm in constant pain but sometimes the pain becomes to much and I feel like ending it all even though I have a pretty good life going for me. How do others manage to hold it together when your falling apart?
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:iconfloodedheart:
FloodedHeart Featured By Owner Sep 29, 2015  Hobbyist Digital Artist
Hi, 
I know this is way after the fact but I just found this group, and saw your question and I thought might as well give some advice.
I find talking to friends to be especially helpful, especially those who also have pain and can understand when I complain.  Drawing and writing also help me quite a bit, as they help me focus on something else.
anyways, hope this can still be helpful to you!
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