#EDSawarenessmonth
In honour of the season, I've destabilised the right side of my jaw. My right dimple is disappearing into the swelling, and I'm a grouchy little stinker.
On the plus side, if it falls out completely, I might not have to publicly speak on Thursday night. So it ain't all bad 🤔
In honour of the season, I've destabilised the right side of my jaw. My right dimple is disappearing into the swelling, and I'm a grouchy little stinker.
On the plus side, if it falls out completely, I might not have to publicly speak on Thursday night. So it ain't all bad 🤔
May 27, 2025 at 3:06 PM
#EDSawarenessmonth
In honour of the season, I've destabilised the right side of my jaw. My right dimple is disappearing into the swelling, and I'm a grouchy little stinker.
On the plus side, if it falls out completely, I might not have to publicly speak on Thursday night. So it ain't all bad 🤔
In honour of the season, I've destabilised the right side of my jaw. My right dimple is disappearing into the swelling, and I'm a grouchy little stinker.
On the plus side, if it falls out completely, I might not have to publicly speak on Thursday night. So it ain't all bad 🤔
This EDS awareness month, Ciara Lee explains more about the interaction between Ehlers-Danlos Syndromes & autonomic dysfunction, and explores what we know about their relationship! 🖤🤍
🔗 www.womeninneuroscienceuk.org/post/autonom...
#Neuroscience #EDSAwarenessMonth #EDS #PoTS
🔗 www.womeninneuroscienceuk.org/post/autonom...
#Neuroscience #EDSAwarenessMonth #EDS #PoTS
May 26, 2025 at 8:45 PM
This EDS awareness month, Ciara Lee explains more about the interaction between Ehlers-Danlos Syndromes & autonomic dysfunction, and explores what we know about their relationship! 🖤🤍
🔗 www.womeninneuroscienceuk.org/post/autonom...
#Neuroscience #EDSAwarenessMonth #EDS #PoTS
🔗 www.womeninneuroscienceuk.org/post/autonom...
#Neuroscience #EDSAwarenessMonth #EDS #PoTS
For #EDSAwarenessMonth, we want to highlight some reasonable accommodations for the workplace. There's a place for everyone in archaeology! #chronicillnessawareness #zebrastrong #invisibleillness #disabilityinarchaeology #inclusivearchaeology #eds #diversityinarchaeology #inclusivity
May 26, 2025 at 12:31 PM
For #EDSAwarenessMonth, we want to highlight some reasonable accommodations for the workplace. There's a place for everyone in archaeology! #chronicillnessawareness #zebrastrong #invisibleillness #disabilityinarchaeology #inclusivearchaeology #eds #diversityinarchaeology #inclusivity
In honour of Ehlers Danlos Awareness Month, here are some things I’ve (partially or fully) dislocated the last month:
Fingers
Toes
Ribs
Shoulder
Ankle
Wrist
Elbow
You could say I’m PAINFULLY aware. 0/10, do not recommend.
Do NOT get your connective tissue from Shein.
#edsawarenessmonth #eds
Fingers
Toes
Ribs
Shoulder
Ankle
Wrist
Elbow
You could say I’m PAINFULLY aware. 0/10, do not recommend.
Do NOT get your connective tissue from Shein.
#edsawarenessmonth #eds
May 26, 2025 at 7:33 AM
In honour of Ehlers Danlos Awareness Month, here are some things I’ve (partially or fully) dislocated the last month:
Fingers
Toes
Ribs
Shoulder
Ankle
Wrist
Elbow
You could say I’m PAINFULLY aware. 0/10, do not recommend.
Do NOT get your connective tissue from Shein.
#edsawarenessmonth #eds
Fingers
Toes
Ribs
Shoulder
Ankle
Wrist
Elbow
You could say I’m PAINFULLY aware. 0/10, do not recommend.
Do NOT get your connective tissue from Shein.
#edsawarenessmonth #eds
Amongst everything I keep forgetting to post for #EDSAwarenessMonth & it's almost over. Thankfully my books are out there doing the work without me. This month I heard from a GP in Canada who bought #TheCompanyOfOwls for the owls but found it gave him new understanding of his patients with #EDS.
May 25, 2025 at 1:44 PM
Amongst everything I keep forgetting to post for #EDSAwarenessMonth & it's almost over. Thankfully my books are out there doing the work without me. This month I heard from a GP in Canada who bought #TheCompanyOfOwls for the owls but found it gave him new understanding of his patients with #EDS.
I've missed a lot of #EDSawarenessmonth, partly due to EDS stuff.
My worst EDS symptom is realising how pathetically grateful I am when something breaks and you can SEE IT. Most of the time, my pain is invisible. Bruising actually makes me feel grateful because the people around me can see it.
My worst EDS symptom is realising how pathetically grateful I am when something breaks and you can SEE IT. Most of the time, my pain is invisible. Bruising actually makes me feel grateful because the people around me can see it.
May 25, 2025 at 5:13 AM
I've missed a lot of #EDSawarenessmonth, partly due to EDS stuff.
My worst EDS symptom is realising how pathetically grateful I am when something breaks and you can SEE IT. Most of the time, my pain is invisible. Bruising actually makes me feel grateful because the people around me can see it.
My worst EDS symptom is realising how pathetically grateful I am when something breaks and you can SEE IT. Most of the time, my pain is invisible. Bruising actually makes me feel grateful because the people around me can see it.
It is the third #edsawarenessmonth in a row where I am recovering from a major EDS related joint surgery. I would like to be LESS aware, thank you. #ehlersdanlossyndrome
May 24, 2025 at 1:04 PM
It is the third #edsawarenessmonth in a row where I am recovering from a major EDS related joint surgery. I would like to be LESS aware, thank you. #ehlersdanlossyndrome
🕯️ New post up for #EDSAwarenessMonth 🕯️
Medical gaslighting nearly kept me from answers I desperately needed. If you’ve ever felt unheard by your doctors—you’re not alone.
📖 Read more on the blog.
Medical gaslighting nearly kept me from answers I desperately needed. If you’ve ever felt unheard by your doctors—you’re not alone.
📖 Read more on the blog.
“It’s Not Just in Your Head”: Recognizing Medical Gaslighting & Honoring EDS Awareness Month
Navigating the healthcare system with chronic illness can be an uphill battle—especially when you're not believed. In honor of Ehlers-Danlos Syndrome Awareness Month, I’m sharing some of my story of medical gaslighting, misdiagnoses, and the long road to answers. This post includes red flags to watch for, EDS facts, and resources for self-advocacy. You're not imagining it—and you're not alone. -You're the one haunting your body, you know when something is wrong, don't let them convince you that you're just seeing things.
dreamingofdragonscom.wordpress.com
May 20, 2025 at 10:27 PM
🕯️ New post up for #EDSAwarenessMonth 🕯️
Medical gaslighting nearly kept me from answers I desperately needed. If you’ve ever felt unheard by your doctors—you’re not alone.
📖 Read more on the blog.
Medical gaslighting nearly kept me from answers I desperately needed. If you’ve ever felt unheard by your doctors—you’re not alone.
📖 Read more on the blog.
📣Het is deze maand #EDSAwarenessMonth en tijdens deze maand vragen wij extra aandacht voor deze belangrijke overlap!
Het wordt tijd dat patiënten worden erkend en een tijdige diagnose kunnen krijgen.
🧵4/4
Het wordt tijd dat patiënten worden erkend en een tijdige diagnose kunnen krijgen.
🧵4/4
May 20, 2025 at 10:33 AM
📣Het is deze maand #EDSAwarenessMonth en tijdens deze maand vragen wij extra aandacht voor deze belangrijke overlap!
Het wordt tijd dat patiënten worden erkend en een tijdige diagnose kunnen krijgen.
🧵4/4
Het wordt tijd dat patiënten worden erkend en een tijdige diagnose kunnen krijgen.
🧵4/4
Thx @shibakaz.bsky.social for the useful shareable info👏 Lack of #EDS awareness, esp in health service, means my bff B is neglected/endangered by all services; vulnerable to abuse/violence; disabled; homeless; fighting for her life.
Pls #HelpMeHelpB www.gofundme.com/f/helpmehelpb
#EDSAwarenessMonth
Pls #HelpMeHelpB www.gofundme.com/f/helpmehelpb
#EDSAwarenessMonth
May 19, 2025 at 4:29 PM
Thx @shibakaz.bsky.social for the useful shareable info👏 Lack of #EDS awareness, esp in health service, means my bff B is neglected/endangered by all services; vulnerable to abuse/violence; disabled; homeless; fighting for her life.
Pls #HelpMeHelpB www.gofundme.com/f/helpmehelpb
#EDSAwarenessMonth
Pls #HelpMeHelpB www.gofundme.com/f/helpmehelpb
#EDSAwarenessMonth
To understand more about the interplay of EDS, Hypermobility and #neurodivergence, watch our CPD certified Community of Practice session Dr Jessica Eccles – Hypermobility, Pain & Neurodivergence: neurodivergencewales.org/en/resources...
#EDSAwarenessMonth
#HSDAwarenessMonth
#EDSAwarenessMonth
#HSDAwarenessMonth
Dr Jessica Eccles - Hypermobility, Pain & Neurodivergence - Niwrowahaniaeth Cymru | Neurodivergence Wales | National Neurodivergence Team
To watch the recording in full screen, click the button in the video player. Downloads Presentation Slides Download PDF Useful Links Download PDF
neurodivergencewales.org
May 19, 2025 at 1:35 PM
To understand more about the interplay of EDS, Hypermobility and #neurodivergence, watch our CPD certified Community of Practice session Dr Jessica Eccles – Hypermobility, Pain & Neurodivergence: neurodivergencewales.org/en/resources...
#EDSAwarenessMonth
#HSDAwarenessMonth
#EDSAwarenessMonth
#HSDAwarenessMonth
I ddeall mwy am y cysylltiad rhwng EDS, Hypersymudedd a #niwrowahaniaeth, gwyliwch ein sesiwn Cymuned Ymarfer wedi’i hardystio gan CPD - Dr Jessica Eccles – Hypersymudedd, Poen a Niwrowahaniaeth: neurodivergencewales.org/en/resources...
#EDSAwarenessMonth
#HSDAwarenessMonth
#EDSAwarenessMonth
#HSDAwarenessMonth
Dr Jessica Eccles - Hypermobility, Pain & Neurodivergence - Niwrowahaniaeth Cymru | Neurodivergence Wales | National Neurodivergence Team
To watch the recording in full screen, click the button in the video player. Downloads Presentation Slides Download PDF Useful Links Download PDF
neurodivergencewales.org
May 19, 2025 at 1:35 PM
I ddeall mwy am y cysylltiad rhwng EDS, Hypersymudedd a #niwrowahaniaeth, gwyliwch ein sesiwn Cymuned Ymarfer wedi’i hardystio gan CPD - Dr Jessica Eccles – Hypersymudedd, Poen a Niwrowahaniaeth: neurodivergencewales.org/en/resources...
#EDSAwarenessMonth
#HSDAwarenessMonth
#EDSAwarenessMonth
#HSDAwarenessMonth
May is #EDSawarenessmonth
So let's spread some knowledge with
#zebtastrongart
find more information about EDS here:
www.ehlers-danlos.org
For my lovely friend @sparklearts.bsky.social
So let's spread some knowledge with
#zebtastrongart
find more information about EDS here:
www.ehlers-danlos.org
For my lovely friend @sparklearts.bsky.social
May 17, 2025 at 8:08 PM
May is #EDSawarenessmonth
So let's spread some knowledge with
#zebtastrongart
find more information about EDS here:
www.ehlers-danlos.org
For my lovely friend @sparklearts.bsky.social
So let's spread some knowledge with
#zebtastrongart
find more information about EDS here:
www.ehlers-danlos.org
For my lovely friend @sparklearts.bsky.social
❤️Help us raise awareness of vEDS today - Comment below with where in the world you're joining in from and share your photos!
Learn more about vEDS here www.ehlers-danlos.com/veds/
#vEDS #VascularEDS #Vascular #VascularEhlersDanlosSyndrome #EhlersDanlosSyndrome #MyEDSChallenge #EDSawarenessmonth
Learn more about vEDS here www.ehlers-danlos.com/veds/
#vEDS #VascularEDS #Vascular #VascularEhlersDanlosSyndrome #EhlersDanlosSyndrome #MyEDSChallenge #EDSawarenessmonth
vEDS - The Ehlers Danlos Society
Learn about Vascular Ehlers-Danlos Syndrome (vEDS) and it's signs and symptoms. Navigate the body map to learn more about the condition.
www.ehlers-danlos.com
May 16, 2025 at 5:26 AM
❤️Help us raise awareness of vEDS today - Comment below with where in the world you're joining in from and share your photos!
Learn more about vEDS here www.ehlers-danlos.com/veds/
#vEDS #VascularEDS #Vascular #VascularEhlersDanlosSyndrome #EhlersDanlosSyndrome #MyEDSChallenge #EDSawarenessmonth
Learn more about vEDS here www.ehlers-danlos.com/veds/
#vEDS #VascularEDS #Vascular #VascularEhlersDanlosSyndrome #EhlersDanlosSyndrome #MyEDSChallenge #EDSawarenessmonth
Knowing and loving the zebras in our lives #edsawarenessmonth #ehlersdanlos
May 15, 2025 at 3:51 PM
Knowing and loving the zebras in our lives #edsawarenessmonth #ehlersdanlos
I was going to stream at 8pm BST but my health has taken a dip and the exhaustion is piling on top so I'm gonna cancel tonight's stream. Gonna take the time to just exist for a bit.
Sorry to dissapoint >~<
#EDSAwarenessMonth #EDS #CFS #chronicfatigue
Sorry to dissapoint >~<
#EDSAwarenessMonth #EDS #CFS #chronicfatigue
May 14, 2025 at 6:34 PM
I was going to stream at 8pm BST but my health has taken a dip and the exhaustion is piling on top so I'm gonna cancel tonight's stream. Gonna take the time to just exist for a bit.
Sorry to dissapoint >~<
#EDSAwarenessMonth #EDS #CFS #chronicfatigue
Sorry to dissapoint >~<
#EDSAwarenessMonth #EDS #CFS #chronicfatigue
📢 “1 in 10 diagnosed. 10 in 10 deserve care.”
Too many are being missed. Join us this May to raise awareness and push for better access to diagnosis and care.
👉 www.ehlers-danlos.org/1in10
#1in10 #EDSAwarenessMonth #HSDAwarenessMonth #TeamZebra
Too many are being missed. Join us this May to raise awareness and push for better access to diagnosis and care.
👉 www.ehlers-danlos.org/1in10
#1in10 #EDSAwarenessMonth #HSDAwarenessMonth #TeamZebra
1in10 - The Ehlers-Danlos Support UK
1 in 10 diagnosed. 10 in 10 deserve care. Only 1 in 10 people with Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD) are diagnosed in primary care. Recent research found that on...
www.ehlers-danlos.org
May 13, 2025 at 4:18 PM
📢 “1 in 10 diagnosed. 10 in 10 deserve care.”
Too many are being missed. Join us this May to raise awareness and push for better access to diagnosis and care.
👉 www.ehlers-danlos.org/1in10
#1in10 #EDSAwarenessMonth #HSDAwarenessMonth #TeamZebra
Too many are being missed. Join us this May to raise awareness and push for better access to diagnosis and care.
👉 www.ehlers-danlos.org/1in10
#1in10 #EDSAwarenessMonth #HSDAwarenessMonth #TeamZebra
“ #EDS affects everything. Skin, joints, blood vessels, digestion, autonomic systems—you name it. It’s a #medical hydra, and most doctors just aren’t prepared to face it.”: buff.ly/aoj7qTP
#spoonies #EhlersDanlos #ChronicPain
by @unremarkableme.bsky.social
#spoonies #EhlersDanlos #ChronicPain
by @unremarkableme.bsky.social
"EDS Misdiagnosis: A Comedy of Errors (That’s Still Not Funny)"
Picture this: you’ve spent years visiting doctors, rattling off symptoms that sound like a shopping list for a medical horror movie. Chronic pain? Check. Joints that pop out like a party trick?…
buff.ly
May 10, 2025 at 7:41 AM
I think you’re feeling like debating today. If you read what Kelly wrote, you’re arguing against straw men.
This is #MEAwarenessMonth & #EDSAwarenessMonth.
Our conditions are those which are frequently harmed by certain wellness practices.
Scientific advances are still needed for our conditions.
This is #MEAwarenessMonth & #EDSAwarenessMonth.
Our conditions are those which are frequently harmed by certain wellness practices.
Scientific advances are still needed for our conditions.
May 8, 2025 at 11:11 PM
I think you’re feeling like debating today. If you read what Kelly wrote, you’re arguing against straw men.
This is #MEAwarenessMonth & #EDSAwarenessMonth.
Our conditions are those which are frequently harmed by certain wellness practices.
Scientific advances are still needed for our conditions.
This is #MEAwarenessMonth & #EDSAwarenessMonth.
Our conditions are those which are frequently harmed by certain wellness practices.
Scientific advances are still needed for our conditions.
Received some donations since posting the update❣️
Thank you #NEISVoid #HelpSky #MAVoid❣️
665 OVERDUE RENT DEADLINE 1 Hour ⏰
190 utilities 💡
140 adjusted MCAS meds total 💊
#MutualAidBoost
#HelpFolksLive2025 #KeepPeopleHoused #DisabilitySOS #MEAwarenessMonth #LongCOVIDAwareness #EDSAwarenessMonth
Thank you #NEISVoid #HelpSky #MAVoid❣️
665 OVERDUE RENT DEADLINE 1 Hour ⏰
190 utilities 💡
140 adjusted MCAS meds total 💊
#MutualAidBoost
#HelpFolksLive2025 #KeepPeopleHoused #DisabilitySOS #MEAwarenessMonth #LongCOVIDAwareness #EDSAwarenessMonth
May 8, 2025 at 6:12 PM
Received some donations since posting the update❣️
Thank you #NEISVoid #HelpSky #MAVoid❣️
665 OVERDUE RENT DEADLINE 1 Hour ⏰
190 utilities 💡
140 adjusted MCAS meds total 💊
#MutualAidBoost
#HelpFolksLive2025 #KeepPeopleHoused #DisabilitySOS #MEAwarenessMonth #LongCOVIDAwareness #EDSAwarenessMonth
Thank you #NEISVoid #HelpSky #MAVoid❣️
665 OVERDUE RENT DEADLINE 1 Hour ⏰
190 utilities 💡
140 adjusted MCAS meds total 💊
#MutualAidBoost
#HelpFolksLive2025 #KeepPeopleHoused #DisabilitySOS #MEAwarenessMonth #LongCOVIDAwareness #EDSAwarenessMonth
To learn more about EDS and EDS Awareness Month, please follow these links:
buff.ly/17juUcz
buff.ly/6jha1AW
buff.ly/s8n3Efd
buff.ly/dqgNR9m
#edsawarenessmonth #ehlersdanlossyndromes #chronicillnessawareness #zebrastrong #invisibleillness #disabilityinarchaeology #inclusivearchaeology #eds
buff.ly/17juUcz
buff.ly/6jha1AW
buff.ly/s8n3Efd
buff.ly/dqgNR9m
#edsawarenessmonth #ehlersdanlossyndromes #chronicillnessawareness #zebrastrong #invisibleillness #disabilityinarchaeology #inclusivearchaeology #eds
May 8, 2025 at 9:30 AM
To learn more about EDS and EDS Awareness Month, please follow these links:
buff.ly/17juUcz
buff.ly/6jha1AW
buff.ly/s8n3Efd
buff.ly/dqgNR9m
#edsawarenessmonth #ehlersdanlossyndromes #chronicillnessawareness #zebrastrong #invisibleillness #disabilityinarchaeology #inclusivearchaeology #eds
buff.ly/17juUcz
buff.ly/6jha1AW
buff.ly/s8n3Efd
buff.ly/dqgNR9m
#edsawarenessmonth #ehlersdanlossyndromes #chronicillnessawareness #zebrastrong #invisibleillness #disabilityinarchaeology #inclusivearchaeology #eds
By the way, it’s #EDSawarenessmonth! TIME TO BE AWARE OF ME, Y’ALL 🤪
I have #EDS, and due to high comorbidity rates and me having ALL THE SYMPTOMS (haven’t been tested because America is so great at healthcare 🙄) it’s likely that I have #POTS, and my excessive allergic reactions are caused by #MCAS.
I have #EDS, and due to high comorbidity rates and me having ALL THE SYMPTOMS (haven’t been tested because America is so great at healthcare 🙄) it’s likely that I have #POTS, and my excessive allergic reactions are caused by #MCAS.
May 8, 2025 at 8:53 AM
By the way, it’s #EDSawarenessmonth! TIME TO BE AWARE OF ME, Y’ALL 🤪
I have #EDS, and due to high comorbidity rates and me having ALL THE SYMPTOMS (haven’t been tested because America is so great at healthcare 🙄) it’s likely that I have #POTS, and my excessive allergic reactions are caused by #MCAS.
I have #EDS, and due to high comorbidity rates and me having ALL THE SYMPTOMS (haven’t been tested because America is so great at healthcare 🙄) it’s likely that I have #POTS, and my excessive allergic reactions are caused by #MCAS.
May marks the beginning of #EDSAwarenessMonth a time when experts from across the globe are encouraged to speak out about an already under researched condition...
socialcare.today/2025/05/06/e... #health #EDS #awareness #care
socialcare.today/2025/05/06/e... #health #EDS #awareness #care
Everything you need to know about EDS Awareness Month
The event dates back to 2006 when it was founded by the Ehlers-Danlos Society. May marks the beginning of Ehlers-Danlos Syndrome (EDS) Awareness Month and this year’s theme is ‘Together We Dazzle’. T...
socialcare.today
May 7, 2025 at 10:41 AM
May marks the beginning of #EDSAwarenessMonth a time when experts from across the globe are encouraged to speak out about an already under researched condition...
socialcare.today/2025/05/06/e... #health #EDS #awareness #care
socialcare.today/2025/05/06/e... #health #EDS #awareness #care
#EDSAwarenessMonth WE BEAT OUR GOAL!!! Thank you so much to everyone who shared and donated 🥹 the fundraiser will still be up through May, we will still be accepting donations! ❤️
May 7, 2025 at 12:36 AM
#EDSAwarenessMonth WE BEAT OUR GOAL!!! Thank you so much to everyone who shared and donated 🥹 the fundraiser will still be up through May, we will still be accepting donations! ❤️