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Posts tagged #EDSAwareness

EMERGENCY INFORMATION
EHLERS-DANLOS

HANDLE THIS PATIENT WITH GREAT CARE! 🦓

✔️ Joints may be lax and dislocate easily.

✔️ Skin tearing, splitting and bruising are common. 

✔️ Mitral Valve Prolapse, umbilical and inguinal hernias may be present. 

✔️ Arterial or intestinal rupture commonly presents as acute abdominal or flank pain that can be diffuse or localized.

✔️ Cerebral arterial rupture may present with altered mental status and be mistaken for drug overdose. 

✔️ Emergency procedures (especially for Vascular #EDS) often require trauma, vascular surgery, ICU. 

✔️ Elective surgery and procedures should be avoided whenever possible. 

✔️ Non-invasive testing is highly preferred.

✔️ Healing may be delayed, with irregular scarring. 

✔️ Use alternatives to sutures whenever possible. 

✔️ Retain sutures/staples for twice the normal period; watch for wound reopening and dehiscence.

✔️ Anesthetists should use caution upon intubation, as jaw dislocation is common.

✔️ Local anesthestics are usually inadequate or short- lasting.

✔️ Potential spinal and/or cerebullar involvement may increase general anesthetic and surgical risks.

#EDSInfo #EhlersDanlosAwareness #EDSAwareness #MySeveralWorlds

EMERGENCY INFORMATION EHLERS-DANLOS HANDLE THIS PATIENT WITH GREAT CARE! 🦓 ✔️ Joints may be lax and dislocate easily. ✔️ Skin tearing, splitting and bruising are common. ✔️ Mitral Valve Prolapse, umbilical and inguinal hernias may be present. ✔️ Arterial or intestinal rupture commonly presents as acute abdominal or flank pain that can be diffuse or localized. ✔️ Cerebral arterial rupture may present with altered mental status and be mistaken for drug overdose. ✔️ Emergency procedures (especially for Vascular #EDS) often require trauma, vascular surgery, ICU. ✔️ Elective surgery and procedures should be avoided whenever possible. ✔️ Non-invasive testing is highly preferred. ✔️ Healing may be delayed, with irregular scarring. ✔️ Use alternatives to sutures whenever possible. ✔️ Retain sutures/staples for twice the normal period; watch for wound reopening and dehiscence. ✔️ Anesthetists should use caution upon intubation, as jaw dislocation is common. ✔️ Local anesthestics are usually inadequate or short- lasting. ✔️ Potential spinal and/or cerebullar involvement may increase general anesthetic and surgical risks. #EDSInfo #EhlersDanlosAwareness #EDSAwareness #MySeveralWorlds

EMERGENCY INFORMATION
EHLERS-DANLOS

HANDLE THIS PATIENT WITH GREAT CARE! 🦓

✔️ Joints may be lax & dislocate easily.

✔️ Skin tearing, splitting & bruising are common.

✔️ Mitral Valve Prolapse, umbilical & inguinal hernias may be present.

#EhlersDanlosAwareness #EDSAwareness #EDS #MySeveralWorlds

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Exercise Is Hard for Me. Now I Know Why — Pain News Network By Madora Pennington Exercise is difficult for me. I’m lucky I can do it at all. I am extremely double-jointed because my tendons and ligaments are excessively stretchy as a result of hypermobile Eps...

Why is #exercise so hard for #hypermobile people? Here's one big reason. #edsawareness #hEDS

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Zo hoog heb ik de tens nog nooit gezet. Maar er moet een hoop geweld op de nieuwe hernia.
Ehlers-Danlos is zo divers.
#EDSawareness

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"A few weeks ago a hypermobility specialist told my pal that standing up normally for us is like standing on a moving bus at all times and I haven't stopped thinking about it. no wonder we're so flipping tired.

I think I mention in my essay for Allies the way disabilities can be quietly noticeable if you know what to look for and I can always spot a hypermobile person by how we stand and sway and move positions a lot while standing, or sit like a dropped cluster of spiderweb."

hux | lizzie huxley-jones @littlehux

#EDSAwareness #HypermobilitySpectrumDisordern #MySeveralWorlds

"A few weeks ago a hypermobility specialist told my pal that standing up normally for us is like standing on a moving bus at all times and I haven't stopped thinking about it. no wonder we're so flipping tired. I think I mention in my essay for Allies the way disabilities can be quietly noticeable if you know what to look for and I can always spot a hypermobile person by how we stand and sway and move positions a lot while standing, or sit like a dropped cluster of spiderweb." hux | lizzie huxley-jones @littlehux #EDSAwareness #HypermobilitySpectrumDisordern #MySeveralWorlds

"A few weeks ago a #hypermobility specialist told my pal that standing up normally for us is like standing on a moving bus at all times and I haven't stopped thinking about it. no wonder we're so flipping tired.

hux | lizzie huxley-jones @littlehux

#EDSAwareness #MySeveralWorlds

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When Zebras Fight Back As a person with Ehlers-Danlos Syndome I'm forced to self-advocate even in the most extreme circumstances.

I had a heart-stopping (almost) start to the new year. I had a heart attack on the 9th. 2026, 25 years into the 21st century and I still encountered a sexist doctor who dismissed my chest pain as nothing more than reflux! Read more at: vocal.media/longevity/wh... #ChronicIllness #edsawareness

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Happy Holidays from the media team at Chronic Pain Partners, we look forward to continuing to support #zebras in 2026.

#EDS #hEDS #HSD #Hypermobility #EDSAwareness #Spoonies #EhlersDanlosSyndrome

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Help Kit Access Life-Changing Healthcare
gofund.me/6c3d9baa
The NHS doesn’t yet offer the tests I need & so I'm fundraising to access these privately. If you can donate or share, I’d be so grateful. Thank you 🙏💜 #eds #edsawareness #chronicillness #potssyndrome #adhd #nhs #healing #healthiswealth

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She’s Not Just Flexible—Her Connective Tissues Are Failing Her

Subscribe to read more on www.pouringpotions.com

#EhlersDanlosSyndrome #EDSawareness #Hypermobility #GeneticDisorders #ConnectiveTissueDisorder #InvisibleIllness #MedicalReels #JointDislocation

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We need provision, we need more medical staff who actually know about EDS and we need properly defined care pathways, screenings and a multidisciplinary approach for all 13 types.

We deserve the care we need.

#disabilitypridemonth #edsawareness

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A photo of an olive-skinned forearm and hand extended over an unfocused background of pink bedding and plushies. There is a biggish (the length of my thumb across the bruise’s width, laterally, and the length of one knuckle-to-knuckle segment of my thumb vertically—I’m sorry, I don’t have a ruler to hand and visually gauging measurements isn’t my forte whatsoever, but maybe 2.5 inches across, 1.25 inches tall?) red-purple bruise about halfway down the inner forearm, with two smaller, greenish-yellow bruises below it/closer to the elbow. The larger bruise has several darker red speckles in it.

A photo of an olive-skinned forearm and hand extended over an unfocused background of pink bedding and plushies. There is a biggish (the length of my thumb across the bruise’s width, laterally, and the length of one knuckle-to-knuckle segment of my thumb vertically—I’m sorry, I don’t have a ruler to hand and visually gauging measurements isn’t my forte whatsoever, but maybe 2.5 inches across, 1.25 inches tall?) red-purple bruise about halfway down the inner forearm, with two smaller, greenish-yellow bruises below it/closer to the elbow. The larger bruise has several darker red speckles in it.

Gotta love that EDS easy bruising thing. 😆 I’m such a fragile fuckin flower. This is from *using a swing on a swingset NORMALLY* for about 20 minutes yesterday (which I’m SUPPOSED TO, it’s both low impact exercise and PT for my vertigo). 😂

#ehlersdanlos #EDSawareness #disability #bruising #bruises

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🎗️ Charity Stream for EDS Society 🎗️
Starting June 1st at 5PM CEST on Twitch!
Join me as we raise funds and awareness for the EDS Society
🕹️ Come hang out, donate if you can, and help us spread the word. Every bit of love and support counts. 💜
twitch.tv/papersharks
#CharityStream #EDSAwareness #EDS

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DeViaNt_Nails_ - Twitch Building a home for the Herd! Charity Stream EDS Awareness Month | !zebra | !EDS | !CFS | !kofi |

Taking a step into nostalgia with some Zoo Tycoon and building us a perfect home for the Dazzle and for Ehlers Danlos Support UK !!!

#EDSAwareness #EDS #hEDS #CharityStream #Dazzle #WeAllDazzleTogether

www.twitch.tv/deviant_nails_

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A graphic with a dark teal background features a large, black and white striped ribbon, symbolizing EDS (Ehlers-Danlos Syndromes) awareness. The text "EDS Awareness Month" is written in bold, orange letters at the top left. Below the ribbon, a speech bubble contains the text "We have lots of ways to celebrate EDS Awareness!" in dark teal letters. To the right, there is a blue party hat with yellow and orange stars and lines emanating from it, suggesting celebration. At the bottom right, a circular logo reads "EDS Awareness Ehlers-Danlos Syndromes" with a small orange banner. The website "WWW.CHRONICPAINPARTNERS.COM" is displayed at the bottom in black text.

A graphic with a dark teal background features a large, black and white striped ribbon, symbolizing EDS (Ehlers-Danlos Syndromes) awareness. The text "EDS Awareness Month" is written in bold, orange letters at the top left. Below the ribbon, a speech bubble contains the text "We have lots of ways to celebrate EDS Awareness!" in dark teal letters. To the right, there is a blue party hat with yellow and orange stars and lines emanating from it, suggesting celebration. At the bottom right, a circular logo reads "EDS Awareness Ehlers-Danlos Syndromes" with a small orange banner. The website "WWW.CHRONICPAINPARTNERS.COM" is displayed at the bottom in black text.

Stock photo of a sparkler going off in the nighttime with orange sparks shooting off surrounded by purple, blue and white dots of light.

Stock photo of a sparkler going off in the nighttime with orange sparks shooting off surrounded by purple, blue and white dots of light.

We've got 22 Ways to Celebrate EDS Awareness Month in May! See if one or two suit you:

buff.ly/bhtQQQ2

#EDSAwareness #EDS #hEDS #Hypermobility #HSD #MedEd #Zebras #NEISvoid #Doctors #MedSky #Spoonies #EhlersDanlosSyndrome

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Strukturen gehört für mich zu einer der bittersten Realitäten im Leben mit dem #EhlersDanlosSyndrom

#SelteneErkrankung #hEDS #MyEDSChallenge #EdsAwareness #rareDisease #ChronischKrank #SeltenSindViele #Mcas #SFN #SmallFiberNeuropathie #EhlersDanlosSyndrome #Zebrastreifen

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Polaroid photo of a fully blooming lilac bush. The flowers are light purple, but they almost look pink. You can see the sky in the top left corner of the image, little bits of blue with hazy white clouds.

Polaroid photo of a fully blooming lilac bush. The flowers are light purple, but they almost look pink. You can see the sky in the top left corner of the image, little bits of blue with hazy white clouds.

Polaroid photo of a bush bursting with lilac blooms

Polaroid photo of a bush bursting with lilac blooms

New essay about learning to care for a chronically ill body and…gardening? It all ties together, I promise. New #polaroids included open.substack.com/pub/kelleycl...

#neisvoid #edsawareness #eherlsdanlos #eds #heds #chronicillness #disability #gardening #sx70 #slr680 #instantfilm

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#edsawareness #heds #mcas #pots #EhlersDanlos #eds #medsky #reprorights

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May: a month of 'awareness' acknowledging the need for greater understanding and the challenges to it

Today is #MEAwarenessDay, it's #InternationalNursesDay #RedCrossWeek #HypermobilityAwareness #EDSAwareness #NationalCleanAirMonth #ActiononStrokeMonth #ShareAStoryMonth #DeafAwarenessWeek #DyingMattersWeek #FibromyalgiaAwareness and more..

louisekenward.substack.com/p/may-a-mont...

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but you’ll be making their day a little easier. #ehlersdanlos #heds #edsawareness

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Visit DeViaNt Nails's Shop! I've opened a shop. Come take a look!

The Digital Download Dino Colouring Pages I've created in support of Ehlers-Danlos Support UK are now live on my Ko-FI!!

I'll be adding more as I finish them!

All proceeds from sales will go into supporting Ehlers-Danlos Support UK

ko-fi.com/deviantnails...

#EDSAwareness #EDS #Zebra

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We are so proud of our community coming together to support DeVi and her fundraising for Ehlers-Danlos Support UK during #EDSAwareness Month

DeVi is unable to take part in many of the walks for charity happening this month so we had out dino's march for her!

May we all continue to Dazzle Together!

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Forget EDS Awareness. We Need a Reckoning. The EDS community doesn’t just need a social media ribbon. It needs a revolution.

@christiecox.bsky.social
My opinions on this topic are strong. Read what I have to say on Substack about how EDS Awareness month needs more than lit up buildings and ribbons on your social media profile. We need real change!
#edsawareness

zebras.substack.com/p/forget-awa...

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🎬 Don’t miss Complicated at the MIND 2025 Conference—Thurs, May 29 at noon! 🍿 Join us for popcorn & a heartfelt convo with EDS patients. 💬🧠 Register: mind2025.org

#Charleston #EDSAwareness #Neuroscience #PatientVoices

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#EDSawareness month day 5

Dislocated my shoulder opening the curtain. Fiddled around a bit to get it back in, my dad, standing there watching, goes "I heard that" when it ground back into place.

I think seismic sensors in Aotearoa also picked it up

Took my Celebrex like a big girl

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#zebrastrongart WIP progress - inks and flats done! 🦓💖🦓

#eds #edsawareness #edsawarenessmonth #comics #webcomics #indiecomics #Celestis

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DeViaNt_Nails_ - Twitch Hi! I'm DeViaNt Nails!! Welcome to my humble stream!! Please make yourself at home and stay as long as you'd like. I will mostly be working on Nail Arts for Luxury Reusable Full Coverage Nail Tips

Starting a lil earlier than usual cos I'm busy later but we're doing our first OFFICIAL Fundraiser Stream on the month raising money for Ehlers-Danlos Support UK as it's #EDSAwareness Month!!

Growing some stripy dino's on @pathoftitans.bsky.social @wildamber.bsky.social !!

Twitch.tv/deviant_nails_

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#EDSawareness day 4.

So far we've only got one wrist strapping and some residual instability in the jaw from Talie's dentist appointment... but I am having an ongoing conversation with myself about whether or not it's worth risking my shoulder to do some outside stuff today...

Gardening is risky

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The cutest zebra support 🥹💖🦓💖 thank you sweet Rylan!! #edsawarenessmonth #ehlersdanlos #edsawareness

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I try not to post too much about my EDS and how it affects me, but with it being #EDSAwareness Month I'm gonna be a little more transparent each day to hopefully highlight just how varied daily living can be with the condition 💜

So hi, I'm DeVi, a Vtuber with EDS 🦓 🤍🖤🤍🖤🤍

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A graphic with a dark teal background features a large, black and white striped ribbon, symbolizing EDS (Ehlers-Danlos Syndromes) awareness. The text "EDS Awareness Month" is written in bold, orange letters at the top left. Below the ribbon, a speech bubble contains the text "We have lots of ways to celebrate EDS Awareness!" in dark teal letters. To the right, there is a blue party hat with yellow and orange stars and lines emanating from it, suggesting celebration. At the bottom right, a circular logo reads "EDS Awareness Ehlers-Danlos Syndromes" with a small orange banner. The website "WWW.CHRONICPAINPARTNERS.COM" is displayed at the bottom in black text.

A graphic with a dark teal background features a large, black and white striped ribbon, symbolizing EDS (Ehlers-Danlos Syndromes) awareness. The text "EDS Awareness Month" is written in bold, orange letters at the top left. Below the ribbon, a speech bubble contains the text "We have lots of ways to celebrate EDS Awareness!" in dark teal letters. To the right, there is a blue party hat with yellow and orange stars and lines emanating from it, suggesting celebration. At the bottom right, a circular logo reads "EDS Awareness Ehlers-Danlos Syndromes" with a small orange banner. The website "WWW.CHRONICPAINPARTNERS.COM" is displayed at the bottom in black text.

Stock photo of a sparkler going off in the nighttime with orange sparks shooting off surrounded by purple, blue and white dots of light.

Stock photo of a sparkler going off in the nighttime with orange sparks shooting off surrounded by purple, blue and white dots of light.

We've got 22 Ways to Celebrate EDS Awareness Month in May! See if one or two suit you:

buff.ly/bhtQQQ2

#EDSAwareness #EDS #hEDS #Hypermobility #HSD #MedEd #Zebras #NEISvoid #Doctors #MedSky #Spoonies #EhlersDanlosSyndrome

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My WIP <3 I've already seen another wip too! #zebrastrongart #zebrastrong #eds #edsawareness #wip #indieartist #comics #webcomics #globalcomix #celestis

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