#mayisedsawarenessmonth

MOST RECENT

Couple days late for EDS awareness month but I finally found the picture! The light hitting Zoey made her look like a zebra! For those of you who do not know, individuals with Ehlers Danlos (EDS) are referred to as zebras. This is due to the medical field saying of when you hear hooves think horses not zebras. Meaning think the common thing associated with symptoms not the rare. Well we are the rare, the zebras! #zebrastrong #edsawareness #mayisedsawarenessmonth #ehlersdanlossyndrome #ehlersdanlos #servicedogintraining #tasktrained #greatdane #germanshorthair

#Repost @edsawareness_official with @get_repost
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This, is a problem! Physical Therapy and exercise is vital to our quality of life, but if done incorrectly, it can be detrimental 🚑. We must change these statistics‼️ .
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Refer your Therapist's to www.edsawareness.com for more information on how to treat Hypermobile patients. (CEU's coming soon)
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Huge THANK YOU to all the Therapist's taking proper care of their bendy patients, and to the professors trying desperately to spread their knowledge. We appreciate you!!
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@trainingzebras @wendychorny @lindabluestein @edswellness
#weareEDS #mayisedsawarenessmonth #EDSAwareness #EDSeducation #ehlersdanlossyndromes #hypermobility #hypermobilityspectrumdisorder #EDS #HSD #physiosforhypermobility #hypermobiletherapy

We have lost some zebras this month🥀.. It's hard to be upbeat and encouraging when you are missing folks that are so dear to you 💔 But that's makes our mission so much more important! We have been speaking to physicians and raising awareness along side you all month 💪 even though our IG page was put on the back burner 🤦🏻‍♀️..
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What are some ways you have raised awareness this month?📣
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#mayisedsawarenessmonth #ehlersdanlossyndrome #EDSAwareness #edseducation #HSD #hypermobility #physicianeducation #EDS

Comissioned illustration, in collaboration with comedian @ashfisherhaha Check out her page for EDS memes! #EDS #ehlerdanlossyndrome #art #illustration #meme #nathklotter #toothbrush #pain #justlaugh #mayisedsawarenessmonth

Day:26 #EDSAwareness #EDSAwarenessMonth2018

#Repost @edsawareness_official ・・・
📣 It's EDS Awareness Month!!! It's your turn to shine zebra squad 💖
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The information in this infographic was taken directly from our patient survey in 2016 👨🏾‍💻. .
Look familiar?? 🤔 .
Keep a close eye 👀 on our page as we release new information, patient stories, and infographics📲 this month. Now is the perfect time to sharpen ⚔️ your advocacy skills. Start by sharing our posts and telling your personal stories. .
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We love you all!!
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@edswellness @lindabluestein
@mandyharvey @kendranmyles @trainingzebras @deannaeds #weareEDS #mayisedsawarenessmonth #edsawareness #EDSeducation #ehlersdanlossyndrome #hypermobility #EDS #Zebrasquad #zebrastrong #bettertogether

Okay- #edslegocontest12 is two #legoninjago prizes! The one winner will get both items! Drawing tonight at 2300 (11pm EST) - all you have to do is comment by answering; What is YOUR all time favorite Lego theme!? #lego #afol #legogiveaway #freelego #legogifts #legofreebie #legopolybag #LegoNinjago #LegoNinjagoMovie #edsawareness #EDSAwarenessMonth #EDSType3 #MayisEDSAwarenessMonth

Self love is cool. Devices that keep you alive are cool. Sunshines out, tubes and lines out.

#sunsoutgunsout #springtime #sunshine #pnw #selflove #bodypositivity #port #jtube #tubefed #gastroparesis #ehlersdanlossyndrome #mayisEDSawarenessmonth #disabledandcute e

Well this was finally added to my charts. I was already diagnosed last month but I hadn’t seen it on paper yet. It doesn’t mean my journey is done, and it hasn’t just started; it’s just a milestone. It means many of my symptoms are validated and explained. It means some of my treatments and trials and findings have made sense and not made sense. It gives me a little more clarity and direction. I like plans. Sometimes it’s nice to have something in a box. The unknown is tough. So there it is. In a box. Added along with other diagnosed issues small and large. But it’s there today. #Eds #edsawareness #edsawarenessmonth #mayisedsawarenessmonth #heds #ehlersdanlossyndrome #hms #hypermobility #arthritis #ddd #degenerativediscdisease #osteoarthritis #chronicillness #chronicpain #inflammation #strength #diagnosis #records #chart #medical #ohsu #icandothis #trust #faith

Life has been a little crazy lately. Between fighting with my insurance company and lots of new doctor appointments/treatments, and then a new job and schedule, I’m barely able to keep up with it all! I’m so glad I made it to NYC yesterday to get my mind off things and just enjoy myself. The day didn’t go as planned, we went there for an EDS group photo and get together done by EDS-NYC that I found on the @ehlers.danlos Facebook page, but the people who ran it had nothing ready. Half the stuff they said they’d have online they didn’t end up even having. We would’ve still stayed but they ended up not having the correct papers for what they were doing. That’s when we bailed. So glad we did because we found an awesome #glutenfree bakery @erinmckennasbakery 🍩 So, I’d say it was a successful day!
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#ehlersdanlossyndrome #ehlersdanlosawareness #mayisedsawarenessmonth
#chronicillness #chronicpain #zebraillness #iamwhatapersonwithaninvisibleillnesslookslike #chronicillnessawareness #chronicillnesssupport #spoonie #eds #fibro #fibromyalgia #invisibleillnesses #invisibleillnessawareness #nyc #glutenfreebakery #glutenfreenyc #glutenfreelife #glutenfreedessert

I was going to post another picture with Fall Out Boy lyrics as the caption but instead I'll post a picture of me and Liza with 1/4th of Fall Out Boy.
We were in Portland for an EDS walk today, we stopped at Oracle Coffee after because Andy Hurley owns it and we have been wanting to go for awhile. Imagine our surprise to actually see Andy there!! 😄

#falloutboy #oraclecoffee #andyhurley #portland #pnw #mayisEDSawarenessmonth #werestillfangirlingsohard #ittookasolidhalfhourforustogetthecouragetoaskforapicture

Day 17 - is EDS expensive? Uhh, yes! My out of pocket medical expenses were around $15k last year. We have shitty but expensive health insurance that doesn’t cover very much. Throw in deductibles, co-insurance, co-pays, prescriptions and glasses which are all out of pocket expenses. It’s looking to be much of the same this year. 🙄😟 .
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#ehlersdanlossyndrome #ehlersdanlosawareness #ehlersdanlos #spoonie #ehlersdanlosawarenessmonth #spooniestrong #zebra #edschallenge #zebrastrong #chronicpain #chronicillness #faultycollagen #ctd #eds #mayforeds #chiari #interstitialcystitis #ihatemedicalbills #medicalexpenses #mayisedsawarenessmonth

May is Ehlers-Danlos Syndrome awareness month. EDS is a congenital disorder that impacts the collagen in the body. Collagen is a protein made up of amino acids. In EDS patients, our collagen is faulty or insufficient to support the normal and healthy function of bones, ligaments, bloid vessels, joints, etc. It is classified as a connective tissue disorder.
Many of us with EDS also have other diagnoses; for me it's dysautonomia and Mitochondrial Disease. Many of the symptoms overlap with those related to EDS, but many are different. When you're dealing with multiple and complex conditions it's a day by day, hour by hour, and often minute by minute race to stay on top of symptom management (as much as possible), appointments, surgeries, maintaining lines and tubes, etc.
May is Ehlers-Danlos Syndrome awareness month.
#eds #ehlersdanlossyndrome #ehlersdanlossyndromeawareness #ehlersdanlossyndromeawarenessmonth #mayisedsawarenessmonth #mayisehlersdanlosawarenessmonth

I'm going to put this here for a little while and answer them when I have the time and brain power. #edsawareness #mayisedsawarenessmonth #livingwitheds #march2018diagnosis #7blessings #manyhealthproblems #stilllovinglife #Godisgood #eds #zebra #whatdoesthstmean #research

#Repost @edsawareness_official with @get_repost
・・・
This, is a problem! Physical Therapy and exercise is vital to our quality of life, but if done incorrectly, it can be detrimental 🚑. We must change these statistics‼️ .
.
Refer your Therapist's to www.edsawareness.com for more information on how to treat Hypermobile patients. (CEU's coming soon)
.
.
Huge THANK YOU to all the Therapist's taking proper care of there of bendy patients, and to the professors trying desperately to spread their knowledge. We appreciate you!!
.
.
@trainingzebras @wendychorny @lindabluestein @edswellness #edswellness #liveedsstrong #just5minutes
#weareEDS #NotJustLooseJoints #mayisedsawarenessmonth #EDSAwareness #EDSeducation #ehlersdanlossyndromes #hypermobility #hypermobilityspectrumdisorder #EDS #HSD #physiosforhypermobility #hypermobiletherapy

This, is a problem! Physical Therapy and exercise is vital to our quality of life, but if done incorrectly, it can be detrimental 🚑. We must change these statistics‼️ .
.
Refer your Therapist's to www.edsawareness.com for more information on how to treat Hypermobile patients. (CEU's coming soon)
.
.
Huge THANK YOU to all the Therapist's taking proper care of their bendy patients, and to the professors trying desperately to spread their knowledge. We appreciate you!!
.
.
@trainingzebras @wendychorny @lindabluestein @edswellness
#weareEDS #mayisedsawarenessmonth #EDSAwareness #EDSeducation #ehlersdanlossyndromes #hypermobility #hypermobilityspectrumdisorder #EDS #HSD #physiosforhypermobility #hypermobiletherapy

Been down & offline due to some health issues, keep those with "invisible illness" in your thoughts this month & every! - #MayIsEDSAwarenessMonth #InvisibleIllness #ButYouDontLookSick... #EhlersDanlos #Syndrome #EDS #POTS #Zebra #Spoonie #Unbreakable #MusicLover #OHMusically #HadToLogOff #Sorry

Day 11 - flare: I don’t really “flare” so to speak. My pain does not go away. It’s always there. Sometimes I get lucky and experience relief from an injection, but that just brings another pain to the forefront. .
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#ehlersdanlossyndrome #ehlersdanlos #eds #heds #mayisedsawarenessmonth #chronicillness #care #edsawarenessmonth #chronicpain #flare #chiari #headache #migraine #mayforeds #edschallenge #spoonie #zebra #zebrastrong

Day 10: my normal. This is my normal- porch sitting, working on a project and listing clothes. I try to stay moderately busy around my house because otherwise I’d nap all the time. 😴🤣 .
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#ehlersdanlossyndrome #ehlersdanlos #mayforeds #edschallenge #eds #mayisedsawarenessmonth #ehlersdanlosawareness #spoonie #zebra #zebrastrong #sleepygirl #chronicpain #porchsitting #chronicillness #projects #lovemyporch

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