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Fuck EDS by Sinned-angel-stock Fuck EDS by Sinned-angel-stock
This is a very small example of my condition EDS or Ehlers Danlos Syndrome.

EDS is a genetic (which means I was born with it, it is in my genes, and there is no cure and very few treatments as many doctors have never even heard of it) connective tissue disorder. Connective tissue is the "building blocks" of our bodies, making up approximately 80% of the entire human form. My body does not make collagen correctly on a genetic level, meaning that the blocks that hold me together are misshapen and don't fit together or work correctly. Imagine trying to build a tower out of blocks that don't fit together. That's EDS.

There are multiple manifestations or "types" and everyone presents differently. I have classical type, and I am minorly hypermobile (known colloquially as "double jointed") -- this picture is an example of my hypermobility. My skin is translucent, fragile, scars easily and heals poorly and slowly, some of the hallmarks for classical type. Because EDS is a systemic issue, there are many associated comorbid conditions.

Dysautonomia: a dysregulation of the autonomic system -- things the body does naturally like breathing, heart rate, blood pressure, and digestion. These automatic systems go all out of whack and you end up with dizziness, fainting, nausea, a resting and standing heart rate well above where it should be, wild swings in blood pressure and body temperature. (I have it, I am constantly dizzy, just standing brings my heart rate to the 130-140 range, making simply walking a task and climbing stairs basically becomes a triathlon)

Gastroparesis and other gastric disorders: gastroparesis is a partial or full paralyzation of the gastric system. Food goes down....and then comes back up. Or, it goes down and stays there for hours, leading to nausea and other digestion issues. (We believe I have a mild form of gastroparesis, but I am still awaiting testing. Currently I am on a liquid diet, as most solid foods, even when blended, give me terrible stomach cramps and nausea)

Chiari malformation: the brain stem herniating out of the back of the skull and into the spinal canal. This can cause a dangerous increase in cerebral spinal fluid, strokes, constant head/neck pain, brain damage, and even death. Often caused by or going hand-in-hand with cranio-cervical instability, or an instability in the neck vertebrae. (I see neurology soon as I believe I've had two mini strokes and I have constant, worsening pain in the back of my neck/head)

EDS caused me to lose my teeth and I am still waiting for implant based dentures, which I will be having to pay $30k out of pocket for. I have been without teeth for 8 months.

Autoimmune disorders like thyroid problems, lupus, rheumatoid arthritis are also very common, as well as many more things I couldn't begin to cover here. An EDSer can end up with a diagnosis list of 30+ items, on fifty pills a day, and still wheelchair-bound. Some experts think that as many as 1 in 200 people have some form of connective tissue disorder.

And yet no one has ever heard of us.

Doctors are taught "when you hear hoofbeats, you think horses, not zebras" -- we are the zebras, constantly misdiagnosed as being overly dramatic, depressed, anxious, or attention- and drug-seeking.

Please help me spread awareness with the use of this image.

And PLEASE. "Double jointed" is not a thing. If you have any of the symptoms I mentioned above and no doctor can figure you out, especially if you are hypermobile, please please advocate for yourself and get the help you need! If you are hypermobile and have no symptoms, then don't worry about it -- many people have EDS and no other symptom. Sometimes they develop symptoms later, sometimes not. It manifests in everyone different, so don't be scared.

"If you can't connect the issues, think connective tissues!"

To learn more please go to the Ehlers Danlos national Foundation website here: ednf.org

If you have any questions please message me directly. It took me five years, 15+ doctors and a lifetime of suffering to find my answer, and this is only the beginning.
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:icontheskaldofnvrwinter:
TheSkaldofNvrwinter Featured By Owner Jun 3, 2016  Hobbyist Digital Artist
You tell it.
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:iconverwildert:
Verwildert Featured By Owner May 29, 2016  Hobbyist Traditional Artist
Hey there. I'm so sorry you are dealing with this. I have a lot of hypermobility (I can do this with my arms too, as well as bend my fingers all around) but I have more of the Marfanoid characteristics: long limbs, tall, spider hands, pectus escavatum plus some of the skin markers of EDS and blood pressure issues like you've described. I just recently got health insurance for the first time in my adult life. How did you go about getting diagnosed? Did you just tell your Dr. (or one of many Drs.) that you are concerned you have EDS or were you in the dark the whole time and went through a myriad of tests to finally be diagnosed? I suspect I have a form of EDS or Marfan's, but I'm so inexperienced with Dr's and the health care system in general that I am just completely lost as to what I need to do. I've also been dismissed in the past with my concerns and I feel like I need some advice in being direct and getting the point across with health care providers.
Thank you for spreading awareness of this BTW. I have mentioned it to Dr's in the past and have been met with blank stares. It's tough knowing something is not-quite-right but not getting the confirmation. I hope you have an easier time in the  future and I truly hope we will find a reasonable treatment beyond monitoring and lifestyle adjustments in our lifetime.
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jul 15, 2016  Professional Photographer
I'm sorry it took so long to get back to you :( I haven't been on DA much.

Is your "wingspan" longer than your height? That is pretty much classic Marfan's if so.

Oh, goodness. There's a couple ways to do it. I got lucky in that my brother was diagnosed before me so I got into a geneticist because of that, but even that took an 8 year fight and a lifetime of being sick.

1) If you believe you have a doctor that will listen, bring him/her some information. This is the least likely scenario, lol. If you can dislocate at will, do it. I know you aren't supposed to do it, but in this case, anything to get yourself believed. Any shocking party tricks, do them for that doctor.

2) If you have unspecified joint pain (which most of us do), ask for a referral to a rheumatologist. This is usually your safest bet. Most rheumies are at least passingly familiar with CTD's and actually tend to be more familiar with Marfanoid characteristics than EDS, so you may luck out in that way.

Add me on Facebook (Courtney Simonds). I can give you more specific information and help you through the process.
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:iconlenlenlen1:
lenlenlen1 Featured By Owner May 16, 2016  Professional General Artist
A) good luck in all things. I think you're great and I hope life doesnt throw you too many more curveballs.
B) Whoa! I think you need to shop around as $30K for dentures doesn't seem anywhere near right at all. That's insane! Claim poverty and get on some public assistance. 30k will ruin you.
Peace love and hugs
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner May 16, 2016  Professional Photographer
They are implant assisted dentures :) They drill posts into the bone and the dentures snap into the posts. It's much firmer, more secure, hopefully less annoying, and won't require that the dentures extend to the roof of my mouth. And he's actually giving me a really great deal for what I'm getting, I've shopped around lol
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:iconlenlenlen1:
lenlenlen1 Featured By Owner May 17, 2016  Professional General Artist
No matter what happens, good luck and much success. And as for the EDS, when it gets bad keep this in mind: You have a husband who loves you, beautiful healthy baby(ies?), and friends, lots of lots of friends! XOXO
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner May 17, 2016  Professional Photographer
Thank you very much. :) I do try to remember the good things.
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:iconlenlenlen1:
lenlenlen1 Featured By Owner May 17, 2016  Professional General Artist
:blowkiss: :blowkiss: :blowkiss:
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:iconaddyrae:
AddyRae Featured By Owner Apr 12, 2016  Hobbyist Traditional Artist
I have EDS as well, and it made me smile to see you advocate for us!  I have Type II, Hypermobility, and problems with my hands have made me pretty much give up drawing at this point as it's too painful so I am very quiet on DA.  It helps to see someone else with the same disorder - sometimes I feel very alone, and endlessly explaining that I have EDS to Doctors or people questioning why I'm disabled gets frustrating.  The assumption that I look okay so I must be faking is tiring.
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Apr 13, 2016  Professional Photographer
Oh yay! I'm so happy to meet a fellow zebra! I'm sorry to hear about your troubles with drawing, this disorder is a killer for creative work...it's very hard for me to do my photography and stock because of EDS, and that's why I can only post a couple of sets a year. Are you on Facebook? You should join a support group. I'm in a couple and they've been lifesavers not feeling so alone. Keep your chin up <3
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:iconextremeyaoifanatic:
ExtremeYaoiFanatic Featured By Owner Jan 25, 2016  Hobbyist Traditional Artist
Saw someone in the comments wigging about the hypermobility and realized that my shoulders are pretty hypermobile too, and that apparently this isn't normal. Thankfully I don't have any of the other symptomsnof EDS, but this is kinda scary!
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 25, 2016  Professional Photographer
That's why I made sure to say that some people are hypermobile without necessarily having some of the more debilitating symptoms. :) It affects everyone differently. But if you spontaneously dislocate joints, then that's a big warning sign and will cause trouble in the future, so get yourself seen! If your health is fine and you aren't worried about it, then yay!
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:iconextremeyaoifanatic:
ExtremeYaoiFanatic Featured By Owner Jan 25, 2016  Hobbyist Traditional Artist
I'm not really worried about it at the moment, but now that I know it can be an warning sign of something bad, I'll definitely be looking more closely and less likely to brush random happenings off!
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 25, 2016  Professional Photographer
yay ^_^
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:iconqxvw198:
qxvw198 Featured By Owner Jan 25, 2016
Unladylike picture ;) but very informative commentary.

You are right that "double jointed" is a bad way to describe hypermobility.  I know one young woman with hypermobility and most other people probably do as well even if they don't realize it.  It isn't something that comes up in conversation a lot.

It would be nice if there was an easy-to-use test for Ehlers Danlos.  All of the different variations make it so hard to pin down.

Thanks for sharing and I hope it helps someone find answers.
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 25, 2016  Professional Photographer
:P When have I ever claimed to be ladylike? In fact this is probably more indicative of my personality than most of the stuff on here lol.

Most of the time it comes up as "party tricks" -- in a group of friends, you say "look what I can do" and you bend your body into some weird shape and people go "ewww!" and the pain doesn't happen until you're older. A large number of EDSers are extremely athletic in their young lives; runners, swimmers, dancers, gymnastics. Or you have someone like me who is so minorly hypermobile that I never really considered it as a problem until I developed all these other health problems and nobody could figure me out. My brother was diagnosed at 4 with hypermobility type, because he's a big floppy rubber doll and it was super obvious in him from a young age. If not for that, I'd probably never have known what is wrong with me because I would have seen "preternaturally flexible, dislocating joints" and passed it off as "no way in hell." Collagen is so prevalent in the body, most of my problems seem to be focused on my internal organs and brain.

On the EDNF website there's a test called the Beighton-Brighton test and if you get a certain number of "points" on it you really should be seen. I think I scored 4 points out of the possible 9 and I'm borderline disabled (at the moment. I'm always hoping that with treatment I will gain some functionality back).
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:iconqxvw198:
qxvw198 Featured By Owner Jan 26, 2016
"On the EDNF website there's a test called the Beighton-Brighton test"

That sort of test can be helpful but, as you know, it isn't definitive.  If you score high then you probably do have the problem, but not for sure.  If you score low, then you probably don't have the problem, but not for sure.  It is the "but not for sure" part that is so frustrating.

It would be nice if there were something as definitive as, say, an influenza test.  If you test positive for the influenza virus, then you for sure have influenza.

Anyway, I wish you the best in your pursuit of better treatment.
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 26, 2016  Professional Photographer
Ah, I guess so, sure. But it seems like most medicine testing runs the risk of false positives and false negatives. I've certainly experienced much of that.
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:iconfoamaniac:
Foamaniac Featured By Owner Edited Jan 25, 2016  Hobbyist General Artist
Thank you very much for sharing with us, after reading what you've summarized about this illness, the only thing I can see is how strong, powerful and resilient you are.

I have OCD, so I understand very well having an illness that doesn't have real treatments and that's a life sentence too.

I really wish and pray that they figure out some proper treatments for EDS that would make your life and others with it much much better.

:heart: :hug: :heart:
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 25, 2016  Professional Photographer
I'm just trying to do what I can to spread awareness and maybe help some people who are medical mysteries find some kind of direction :)

It's hard to be in that "incurable" variety, especially since for some reason doctors tend to think that we're (and this goes for OCD too) still faking it even after being diagnosed. I actually am starting an awareness campaign for us chronically ill people called #patientblaming -- doctors who blame US for our symptoms instead of trying to help.

I wish you the best of luck too ^_^
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:iconjackiecrossley:
JackieCrossley Featured By Owner Jan 25, 2016  Hobbyist Photographer
That's really, really shitty, to put it mildly.   It's not a disease I've heard of, but the herniation of the brain-stem rang massive alarm bells!  As did the dysautonomia.  I'm a nurse and worked in neurosciences for 10 years.  I hope research soon finds a cure for you, or at least, gives you some symptomatic relief. xx

FAB HAIR!  Lovin' the pink!! 
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 25, 2016  Professional Photographer
Yeah, the chiari malformation is the big one I'm worried about too. The constant pain in my head/neck, neurological issues, possible strokes (or at least severe enough migraines to present with stroke symptoms, which is in itself concerning), pressure in my head, da da da...I mean the list goes on. Of course I'm not a medical professional, it could be something totally different, but from support groups and speaking to others with EDS, many of them have chiari or CCI and present with my exact symptoms. So it's a big "hmmm" kind of thing. And my mom has a 3mm herniation of her right cerebellar tonsil as found by a supine MRI (an upright MRI and gravity would probably show more, but she refuses to get it checked out), so there's even the family component. It's scary though because it means brain surgery, and I'm always worried about turning my head wrong and triggering another stroke/severe migraine (loss of vision in one eye, vomiting, numbness in face/arms, loss of control of legs, forgetting how to read, slurring, becoming incoherent, memory blackouts, searing pressure/pain in head, forgetting important names/numbers -- it's happened twice now). I'll take the brain surgery over being on narcotics for the rest of my life, though...

Thank you :) I feel I should have been born with pink hair :lmao:
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:iconjackiecrossley:
JackieCrossley Featured By Owner Jan 26, 2016  Hobbyist Photographer
I hope brain surgery can offer some relief for you.  I can't imagine how you feel with the threat of a stroke constantly hanging over you, although it does make me think "Life is for living, and living for now."  
Best wishes and good luck with everything. xx

You inspired me, anyway. I've had my hair pink a couple of times (just highlights).  I'm off to get some pink in my hair this afternoon!  Rainbow Butterfly 
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 26, 2016  Professional Photographer
Well, I haven't been officially diagnosed with it yet. It's just a high probability. But here's hoping something comes through haha.

Thank you, and wow, that's so awesome!
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:iconaxel-von-wallenrod:
Axel-Von-Wallenrod Featured By Owner Jan 25, 2016
OMG o.o

I hope you're given the proper treatment soon! I send you ALL THE HUGS! <3
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 25, 2016  Professional Photographer
Here's hoping. Doctors suck.

:hug: :heart:
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:iconyhoko:
Yhoko Featured By Owner Jan 24, 2016  Professional General Artist
This.. erm... *shivers*. I wish you all the best and a huge amount of luck! Never give up.
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 24, 2016  Professional Photographer
I suppose it is a little jarring when you aren't used to it. ^^; Thank you, it's a struggle sometimes but this is the life I was given and there's lots of good things in it :)
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:icontsareia:
tsareia Featured By Owner Jan 24, 2016  Hobbyist Digital Artist
Thank you for sharing to garner understanding and support. As a medical student I'll be sure to share this with my classmates and colleagues, and do my best to remember in case I have a patient down the road who presents with similar symptoms, hopefully sparing them the pain of not knowing that you've had to endure. Wishing you and your family the best <3 
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 24, 2016  Professional Photographer
Thank you so much! I love to see people in the medical field with your attitude, it makes me feel very hopeful for the future! :hug: 
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:iconsenshistock:
SenshiStock Featured By Owner Jan 24, 2016  Hobbyist Photographer
:hug: :heart:
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:iconsinned-angel-stock:
Sinned-angel-stock Featured By Owner Jan 24, 2016  Professional Photographer
:glomp:
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January 24, 2016
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