EDS awareness

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EDS awareness
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📢 Calling all those impacted by EDS! 📚

I'm currently working on a book centered around the experiences of living with EDS, and I'd love for you to be a part of it.

It started as a memoir but has expanded to focus more on a collective narrative around EDS.

Your voice matters! By sharing your unique perspective, we can create a rich tapestry of narratives that truly represent the diverse experiences within the EDS community.

The goal? To delve into how your life experiences before diagnosis shape your journey with EDS, and to gain insight into how you navigate life with this chronic illness over time.

Interested in being heard? Click the link below to fill out the questionnaire and any questions/problems just give me a shout:

EDS Book Questionnaire

Let's make our voices heard together! 🌟 #EDSAwareness #EDS #EhlersDanlos #EhlersDanlosSyndrome #shareyourstory

EDS Book Questionnaire

Hi, Scott here. Fill out the questions below in as much or as little detail as you want, or are able for. Also, just skip any questions you don't want to answer. Also, if you feel that a call would be better email me and we can get something set up. The aim is to better understand the influence that your life experience prior to diagnosis on how you relate to and manage EDS as well as trying to get a better understanding of how you view your ability to function in life with EDS and how that has changed over time. I am using diagnosis as a landmark event that we all share, but if you'd prefer you can think of it as when things started to go wrong for you. To clarify. I am using EDS as a label to keep things simple but I am including Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders in the discussion. All responses will remain confidential and will not be shared publicly without prior permission. Any questions or problems, email me scottorrance@gmail.com
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Little Bit of Progress.

I just thought I would share the first strawberry I picked that I grew on my allotment this year.
Sometimes progress we make or the things we get achieved in a day can feel as small as this strawberry.
But even something as small as a strawberry can bring happiness 😊
Keep at it people, and rest when you need.
💪🏽🍓 #EDS #ChronicIllnessEDS #EhlersDanlosSyndrome #EDSHT #EDSAwareness #HypermobileTypeEDS #Spoonie #SpoonieProblems #ChronicIllness #progress #happy

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Hi , just to say hello😁 #EDSAwareness

I’m new here and I am looking forward to meeting fellow EDS’ers! I hope you have the best day you can 😁


Winter is here

I know this since I feel like a broken werewolf, you know transformed but with out the abilities 😂
Bed rest is my normal an don’t even want to medicate
Guess I’m looking to re discover myself to see if the medication is worth it, in other words am I medicating to preserve a broken me or can I do better ?

But self care has gone down hill an the fog is so fuckin present that I can’t remember what I was thinking a few bloody seconds earlier! Talk about annoying right?
An no money to boot to pay out of pocket medical treatments that somehow those greedy ass morons ( caugh republican law makers ) have re written the laws to were medical practices can decline state aid now.

Seriously republicans lawmakers, they make me sick since they sold out an lost all decency when they were duped into believing or willingly fallowed a con man in favor of more money 💰 ( most actual republicans I still happen to think are fairly decent people unfortunately there’s a few bad apples that only care about $💰 )
Going have to throw that in since my grandparents are republicans but they were tricked by fear tactics an that promise of the 1950’s all over.
-We’re all fucked, so they can make a buck- should be the republicans moto eh.

#ChronicIllnessEDS #EhlersDanlosSyndrome #ChronicPain #EDSAwareness #HypermobileTypeEDS


Epideral injections in back experience ?

So long story short I’m a Eds patient an my backs no good
Several herniations an yeah can’t walk really
Also only 34 an weight wise great ( try to keep it in check as extra weight doesn’t help anything )

So yeah can’t live like this and need releaf to even wash properly etc

So just did local cortisol injections again
In the neck this time,
An even local seditive well did little to help
Aka it hurt like a 🤬

So I’m wondering can I ask with some assurance to get a more general anstiesa ( spelling is wrong I think ) to help with local pain during the epidural or is that going to be wishful thinking?

I don’t want to skip them but seriously I don’t know if I can volunteerly get them unless I’m out cold
An I’m quite used to pain
Still doesn’t mean I volunteerly want to torture myself

#ChronicIllnessEDS #EhlersDanlosSyndrome #EDSAwareness #ChronicPain #BackPain

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My mood 🤯

In between flair ups an yeah just 😳☹️🥺🤯😡🤬😨😴🥱🤪 not sure what my mood actually is since the brain power needed to describe it is too drained. Ah brain fog checkmate old friend
#ChronicIllnessEDS #EhlersDanlosSyndrome #EDSAwareness #HypermobileTypeEDS



I created this group in hopes to help others mange there life with EDS and other chronic illnesses. My main goal is to help spread awareness around rare disease/chronic illness. as well as break the stigma around disabled/chronically ill people.

My name is Alyssa Kelly and i had Hyper mobile type EDS and 6 of its comorbidity. I used to work as a nurse full time but i cannot do that anymore. I have been on a journey to try and figure out what my identity is besides being chronically ill or a nurse. My favorite color is yellow. And i happen to very good at painting and i love it. If you join please feel free to introduce yourself.




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