Ehlers Danlos Syndrome and Men: Three Key Issues Men and their experiences living with hypermobile Ehlers Danlos syndrome is a whole topic…one that doesn’t get nearly enough attention in my opinion.  When you look online for info…

Guys have #EhlersDanlosSyndrome too, you know.

#BlogPost #MensHealth #GuysWithEDS #ChronicPain #ChronicIllness #EDS #hEDS #MCAS #POTS #HolisticHealth 💕 #Wellness

A memorial-style poster on a teal background with white text, two white doves holding olive branches, a crying zebra illustration, and a photo of two people standing together at an indoor event. Text on the poster says: EDS Awareness Ehlers-Danlos Syndromes Remembering EDS champion: Dr. Grahame 1932 - 2026 chronicpainpartners.com In the photo, Dr. Grahame, an older light-skinned man with short gray hair and glasses is wearing a light beige jacket over a blue striped shirt. Next to him is Jan Groh, a light-skinned woman with short dark hair and glasses wearing a patterned dress and a scarf, with visible forearm supports/braces and a blue-handled mobility aid. Two small candle illustrations appear near the bottom corners.

Remembering Beloved EDS Specialist Dr. Rodney Grahame (1932-2026)

www.chronicpainpartners.com/remembering-...

#EDS #EhlersDanlosSyndrome #hEDS #HSD #Zebras #Medicine #Doctors #NEISvoid

** youre too young to be [enter symptom] ** Picture of a little boy who looks "crazy" is holding a knife

Tell us about it 🔪🙈
What are the different "You're too young" comments you have heard?

linktr.ee/thezebraalli...
#chronicillness #raredisease #invisibleillness #disability #dynamicdisability #mentalhealth #healthmeme #EDS #HSD #meme #memes #ehlersdanlossyndrome

I only slept four hours last night, but I’m staying up until 2am so I can take more acetaminophen. I’m in so much pain right now ( #Painsomnia ), but Ik if I don’t stay up, I’ll be in even worse pain come the morning 🤕

#NEISVoid #Disabled #Disability #Insomnia #ChronicPain #EDS #Fibromyalgia

I’m up to 13 medical phone calls for the week and there’s still one more day to go. Being disabled takes so, so much time and energy… energy that we often lack as a side effect of being, ya know, disabled 🫠

#Disability #Disabled #ChronicIllness #ChronicallyIll #Spoonie #NEISVoid #EDS #TubeFed

We all have our specialty areas, too. Here are mine.

#ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness

Image from @inmyhead_sharon (not sure which platform) about people who are not chronically ill, think folks with Chronic Illnesses arent doing enough to "fix it".

What would you add to this image?
🩵🦓🩵

Chronic Illness Resource Orgs:
Chronic Illness Coalition
Partnership to Fight Chronic Disease
NACDD
Good Days

linktr.ee/thezebraalliance
#chronicillness #raredisease #EDS #ehlersdanlossyndrome #invisibleillness #disability #dynamicdisability #mentalhealth

Rosannatxt - Twitch 🦓 12H STREAM: 6h of co-working 🔜 Gaming later ⏐ !plussy !playlist !donate

Hi all, one of my favorite twitch streamers for co-working is doing a 12 hour stream to kick off her fundraising for EDS.
Please come have a look and say hello in the stream :-)
www.twitch.tv/rosannatxt

More info on the fundraiser:
rosannatxt.notion.site/EDS-Society-...

#EDS #Twitch #fundraiser

Self-Care For Folks With Hypermobile Ehlers-Danlos Syndrome (Yes, You Do Deserve It) Self-care when you live with a complex disorder like EDS (especially if you have the usual add-ons like MCAS or POTS) is crucial&#…

Nope. Definitely not selfish.

#BlogPost #ChronicIllness #ChronicPain #EDS #hEDS #MCAS #POTS #HolisticHealth #Acupuncture #TuiNa #SelfCare 💕 #Wellness

Don’t worry, I only have 7 appts scheduled for this week and another 7 next week 🫠

AND!! Only 6 phone call so far this week…not sure how many portal messages though 😥

At least I have my audiobooks and podcasts 🎧

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Gastroparesis #EDS #POTS

The Quiet Weight of Chronic Illness Grief – EDSAwareness.com Living with a rare, chronic illness is profoundly isolating—not only physically, but emotionally. Even when surrounded by others, I often feel like a ghost, disconnected from the world around me. I…

"Everything hit me at once: the freedom others enjoy, the #loss of my autonomy, the rigidity of a #life ruled by symptoms. My thoughts & reality were so different, it was like we no longer spoke the same language.": buff.ly/1O8RBle

via @cppedsa.bsky.social
#NEisVoid #disability #ChronicIllness #EDS

Yes! I use #Guava to track medications, symptoms, vitals, and more! I also have an app that will alert me to barometric pressure changes so I can better prep for the day!

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Gastroparesis #FeedingTube #TubeFed #Tubie #EhlersDanlosSyndrome #EDS

Always the dumbest shit i see lol. 1 is so easy if you're not old or have other conditions that prevent flexibility. They really need to find a better example of hypermobility :/ #eds #hypermobility

Intuitive Eating vs. Mindful Eating–Which Is Better For You? (Some Tips For Folks With EDS, MCAS, &/or POTS) Have you ever thought about the difference between mindful eating and intuitive eating?  They are not the same thing, but both can be helpful approaches to nutrition when a person lives with E…

Why not both?

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #GutHealth #Mindful #Intuitive 💕 #Wellness

Will your doc recognize it’s from #Covid? Probably not. But you’ll get care. If you go in w/ #MECFS you’ll be shown the door. There is also so much comorbidity of ME w/ #POTS #MCAS #EDS etc that even if you have one of these & don’t have ME, learning about it could still help you to answers. 2/

How Chinese Medicine Treats hEDS (Where to Begin) Acupuncture and other modalities of Chinese medicine can be an excellent resource for people with complex disorders, EDS and the c…

How does Chinese medicine treat EDS?

#BlogPost #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare #Strategies
💕 #Wellness

There is still so much to learn.

buff.ly/Bjo6ZvS

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

New diagnostic criteria for EDS? Yes, but the story's still unfolding. It's not over by a long shot.

buff.ly/Bjo6ZvS

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria) There are rumblings in the Ehlers-Danlos syndromes community.  Change is coming.  Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December…

This really is a never-ending story...

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Thank you @dsnorthnorth.bsky.social for highlighting the lack of an NHS care pathway for EDS/CCI patients like Olivia. A minor correction, we had to fundraise £100k not £250k, was still A LOT of money to find tho.

@sedsconnective.org @ehlersdanlos.bsky.social @achronicvoice.com

#EDS #CCI

Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria) There are rumblings in the Ehlers-Danlos syndromes community.  Change is coming.  Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December…

There is always something new to learn, right?

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Acupuncture & EDS: How to Find a Practitioner of Chinese Medicine When You’re a Zebra ~~~~~             My first blog post about finding an acupuncturist was in 2019, so it’s been a while.  Besides, the original essay…

If you're complicated it is that much more important to know how to find the right acupuncturist for your needs.

#BlogPost #Acupuncture #EDS #hEDS #MCAS #POTS #HolisticHealth #SelfCare
💕 #Wellness

In summary, zero NHS care = fundraising for surgery abroad (we had to raise £100k) + then no aftercare/rehab in the UK, even after major lifesaving neurosurgery.

It seems insane but this is true.

#EDS #CCI

Thank you @joshnewburymp.bsky.social for leading this debate on the lack of an NHS care pathway for Ehlers Danlos Syndrome patients with Craniocervical Instability.

Everything he describes, Olivia has been through and is still going through.

#EDS #CCI @achronicvoice.com @ehlersdanlos.bsky.social

Rewriting Your Story? (Thoughts on New HSD/hEDS Diagnostic Criteria) There are rumblings in the Ehlers-Danlos syndromes community.  Change is coming.  Big change: the EDS Society is publishing updated diagnostic criteria for all versions of EDS in December…

It's an ongoing project.

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

French Tutor in Twickenham in London. Foreign Language Tutors French Tutor in Twickenham Bonjour, my name is Claire, I am a native French tutor with five years of experience and some fantastic results...

French Tutor in Twickenham
need-a-pro.com/en/category/...

#FrenchLesson #NativeFrenchTutor #French #languagelearning #frenchlanguage #tutor #education #teacher #FrenchTutor #EDS

This really is a never-ending story.

buff.ly/Bjo6ZvS

#NewBlogPost #ANeverEndingStory #EhlersDanlosSyndrome #EDS #ChronicPain #ChronicIllness #Booksky #Books #WritersCommunity 💕 #Wellness

Recognize any of the following?

#ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness

It’s rude of my disabilities to disable me, but at least I have my eight (8) library books to keep me company 🙂‍↕️

#NEISVoid #Disabled #Disability #ChronicIllness #Spoonie #Tubie #FeedingTube #WheelchairUser #EDS #EhlersDanlosSyndrome #AmReading #BookSky #LibraryKid #Libby #AmReadingFantasy

What are you looking to change when it comes to your healing journey?

#ChronicPain #AcuteInjury #GutHealth #EDS #MCAS #CosmeticAcupuncture #Skincare #ScarRevision #MensHealth #PreventiveCare 💕 #Wellness