Connective Issues
@connectiveissues.bsky.social
Reporting on Ehlers-Danlos Syndrome and connected issues through beautiful, interesting design, multimedia projects, and accessible writing.
Also, memes.
Currently a singular effort by @shelevergreen.bsky.social via Substack w/ hopes to expand
Also, memes.
Currently a singular effort by @shelevergreen.bsky.social via Substack w/ hopes to expand
A thorough list of everything you want to know about compression garments related to EDS and other health issues with citations and caveats:
eds.clinic/articles/com...
eds.clinic/articles/com...
Compression Garments for POTS, EDS, ME/CFS and More | The EDS Clinic
eds.clinic
December 19, 2024 at 5:49 PM
A thorough list of everything you want to know about compression garments related to EDS and other health issues with citations and caveats:
eds.clinic/articles/com...
eds.clinic/articles/com...
Over half EDS patients made less than $25,000 in 2022 — new study in Mayo Clinic Proceedings led by Claire Francomano:
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022
To determine the financial impact of Ehlers-Danlos syndromes (EDS) on patients in the United States by examining the medical expenses incurred by pati…
www.sciencedirect.com
December 17, 2024 at 4:36 PM
Over half EDS patients made less than $25,000 in 2022 — new study in Mayo Clinic Proceedings led by Claire Francomano:
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
📢 The Trump administration will be a threat to our wellbeing and existence.
It's okay to be scared about that.
I'll work on a piece soon about what the risks are with the new presidency, as well as what to do about it. Things I'm worried about include...
1/
It's okay to be scared about that.
I'll work on a piece soon about what the risks are with the new presidency, as well as what to do about it. Things I'm worried about include...
1/
November 13, 2024 at 8:02 PM
📢 The Trump administration will be a threat to our wellbeing and existence.
It's okay to be scared about that.
I'll work on a piece soon about what the risks are with the new presidency, as well as what to do about it. Things I'm worried about include...
1/
It's okay to be scared about that.
I'll work on a piece soon about what the risks are with the new presidency, as well as what to do about it. Things I'm worried about include...
1/
It will be interesting to see how research on the MTHFR gene + EDS plays out.
November 13, 2024 at 7:46 PM
It will be interesting to see how research on the MTHFR gene + EDS plays out.
This is how you doctor.
At the three month followup, after I was updating him on my progress (excellent), he stopped partway through the conversation and said, "I owe you an apology. I forgot that Ehlers-Danlos doesn't show on imaging a lot of the time, and I should not have needed that reminder."
November 13, 2024 at 7:41 PM
This is how you doctor.
Reposted by Connective Issues
“You have Ehlers Danlos? That’s pretty cool you can move your body like that!”
Me: *Falls down the stairs because my ankle hyperextended and went completely sideways*
Me: *Falls down the stairs because my ankle hyperextended and went completely sideways*
October 27, 2024 at 7:15 PM
“You have Ehlers Danlos? That’s pretty cool you can move your body like that!”
Me: *Falls down the stairs because my ankle hyperextended and went completely sideways*
Me: *Falls down the stairs because my ankle hyperextended and went completely sideways*
Weather changes can absolutely impact pain levels!
So I already knew that cold causes me to have contractures and more severe joint pain, but TIL: Changes in atmospheric pressure & humidity can also be sources of exacerbated pain for EDS folks.
(Because they cause pressure fluctuations within our joint capsules and surrounding tissues. HOW FUN!)
(Because they cause pressure fluctuations within our joint capsules and surrounding tissues. HOW FUN!)
November 13, 2024 at 7:38 PM
Weather changes can absolutely impact pain levels!
Diagnosis can be this simple, folks. Doctors need to document when they suspect EDS for the sake of their patients.
And the letter isn't like "BREAKING NEWS THIS PATIENT WAS MISDIAGNOSED" It's like "situation normal, checkup fine, Beighton Score 9, Ehlers-Danlos patient doing A-OK, goodbye"
November 13, 2024 at 7:37 PM
Diagnosis can be this simple, folks. Doctors need to document when they suspect EDS for the sake of their patients.
Reposted by Connective Issues
On a positive note, I want to reintroduce Gigi Beacham. Gigi lives with Ehlers–Danlos syndrome. I want to do better about reflecting different kinds of kids who attend Milford High. Read the full strip at GoComics or in the Hartford Courant's funny pages. www.gocomics.com/gilthorp/202...
November 6, 2024 at 7:29 PM
On a positive note, I want to reintroduce Gigi Beacham. Gigi lives with Ehlers–Danlos syndrome. I want to do better about reflecting different kinds of kids who attend Milford High. Read the full strip at GoComics or in the Hartford Courant's funny pages. www.gocomics.com/gilthorp/202...
Reposted by Connective Issues
me: ooh, the victim on this Bones has Ehlers-Danlos, let's see how badly they get it wrong
victim: slight spinal curvature, cartilage deficiency, very high IQ, has OCD
me: ...okay Bones I didn't need you to read me THAT hard, geez 😩
victim: slight spinal curvature, cartilage deficiency, very high IQ, has OCD
me: ...okay Bones I didn't need you to read me THAT hard, geez 😩
November 8, 2024 at 3:17 AM
me: ooh, the victim on this Bones has Ehlers-Danlos, let's see how badly they get it wrong
victim: slight spinal curvature, cartilage deficiency, very high IQ, has OCD
me: ...okay Bones I didn't need you to read me THAT hard, geez 😩
victim: slight spinal curvature, cartilage deficiency, very high IQ, has OCD
me: ...okay Bones I didn't need you to read me THAT hard, geez 😩
Reposted by Connective Issues
Reposted by Connective Issues
Folks have been talking about it already, but I am going to beg you: put renewed focus on trying not to get COVID. Healthcare is already strained. They plan to make it worse.
We know that the odds of getting long COVID increase with subsequent infections. And long COVID touches everything.
We know that the odds of getting long COVID increase with subsequent infections. And long COVID touches everything.
November 8, 2024 at 10:25 PM
Folks have been talking about it already, but I am going to beg you: put renewed focus on trying not to get COVID. Healthcare is already strained. They plan to make it worse.
We know that the odds of getting long COVID increase with subsequent infections. And long COVID touches everything.
We know that the odds of getting long COVID increase with subsequent infections. And long COVID touches everything.
Reposted by Connective Issues
Also while I’m not a huge fan of the book, one of the biggest fantasy series right now, Fourth Wing, has a disabled lead. Violet has ehlers-danlos syndrome.
Anyone who says disabled people don't belong in fantasy but find themselves in awe of characters with robotic limbs, or folks who use magic to do mundane tasks that they cannot do of their own volition are not serious people worth listening to.
People are really proving our whole point about disability representation in fantasy.
Repost if you think people with disabilities belong in fantasy settings.
unseenunheardcomic.com
Repost if you think people with disabilities belong in fantasy settings.
unseenunheardcomic.com
September 22, 2024 at 1:40 AM
Also while I’m not a huge fan of the book, one of the biggest fantasy series right now, Fourth Wing, has a disabled lead. Violet has ehlers-danlos syndrome.
Especially if you have a BodyBraid
I'm going to be honest, for a while I assumed the reason for the nickname "zebras" for Ehlers-Danlos was because all the joint braces make you look stripped
September 23, 2024 at 5:34 PM
Especially if you have a BodyBraid
Important perspectives in this substack note about how doctors are struggling in the U.S. healthcare system.
But there is a power dynamic here, and we are not the same.
Docs can leave the profession. We are suffering and can’t magically get better on our own.
substack.com/@dramberhull...
But there is a power dynamic here, and we are not the same.
Docs can leave the profession. We are suffering and can’t magically get better on our own.
substack.com/@dramberhull...
Dr. Amber Hull on Substack
I’m going to let you in on a secret:
Doctors are as fed up with the US healthcare system as patients are. We’re exhausted from fighting an uphill battle to get insurance companies to cover necessary ...
substack.com
September 21, 2024 at 7:37 PM
Important perspectives in this substack note about how doctors are struggling in the U.S. healthcare system.
But there is a power dynamic here, and we are not the same.
Docs can leave the profession. We are suffering and can’t magically get better on our own.
substack.com/@dramberhull...
But there is a power dynamic here, and we are not the same.
Docs can leave the profession. We are suffering and can’t magically get better on our own.
substack.com/@dramberhull...
My osteopath accidentally subluxated my ankle (didn't hurt) last time I saw him. He looked surprised and said he forgets just how hypermobile I am.
I periodically consider if I am faking my EDS.
Having my electrolysist every week be like "what the fuck" when I hyperextend my neck to give her access, or "your skin is so fucked up" when it just keeps stretching, has helped.
Maybe I did just need validation 🙃
Having my electrolysist every week be like "what the fuck" when I hyperextend my neck to give her access, or "your skin is so fucked up" when it just keeps stretching, has helped.
Maybe I did just need validation 🙃
September 19, 2024 at 3:06 PM
My osteopath accidentally subluxated my ankle (didn't hurt) last time I saw him. He looked surprised and said he forgets just how hypermobile I am.
"It has been suggested that the connective tissue abnormalities in EDS can lead to issues with blood vessel structure and function, contributing to autonomic dysfunction. However, the exact relationship between EDS and POTS requires further research..."
open.substack.com/pub/cortneyg...
open.substack.com/pub/cortneyg...
Understanding Autonomic Dysfunction
Diving in to dysautonomia, the overlap with other conditions, and the latest in research
open.substack.com
September 16, 2024 at 6:41 PM
"It has been suggested that the connective tissue abnormalities in EDS can lead to issues with blood vessel structure and function, contributing to autonomic dysfunction. However, the exact relationship between EDS and POTS requires further research..."
open.substack.com/pub/cortneyg...
open.substack.com/pub/cortneyg...
Best journal article title ever. Also here is my dog. She likes to perch.
September 16, 2024 at 3:56 PM
Best journal article title ever. Also here is my dog. She likes to perch.
If you haven't read The Invisible Kingdom yet, you must.
September 12, 2024 at 5:38 PM
If you haven't read The Invisible Kingdom yet, you must.
Reposted by Connective Issues
i luv luv luv classical type Ehlers Danlos making my shoulder dislocate entirely and then slam back into socket because i coughed
September 9, 2024 at 12:35 AM
i luv luv luv classical type Ehlers Danlos making my shoulder dislocate entirely and then slam back into socket because i coughed
This week I talk about some of my personal experiences receiving poor care from docs and what they could have done better.
open.substack.com/pub/connecti...
open.substack.com/pub/connecti...
September 10, 2024 at 11:02 PM
This week I talk about some of my personal experiences receiving poor care from docs and what they could have done better.
open.substack.com/pub/connecti...
open.substack.com/pub/connecti...
I've also heard good things about this book but haven't gotten it yet myself.
www.chronicpainpartners.com/author-chris...
www.chronicpainpartners.com/author-chris...
September 10, 2024 at 3:32 PM
I've also heard good things about this book but haven't gotten it yet myself.
www.chronicpainpartners.com/author-chris...
www.chronicpainpartners.com/author-chris...
An upcoming issue sneak peek: The Beighton Score is a screening tool for generalized joint hypermobility, but there are some major caveats that can lead to misdiagnosis.
September 9, 2024 at 11:40 PM
An upcoming issue sneak peek: The Beighton Score is a screening tool for generalized joint hypermobility, but there are some major caveats that can lead to misdiagnosis.
Merch shop is up! Original art by me. Currently only have the "Think Zebra" line available, but more designs coming soon.
www.shelevergreen.com/category/all...
www.shelevergreen.com/category/all...
All Products | Shelevergreen
Connective Issues is a newsletter focused on original reporting and content about Ehlers-Danlos Syndrome, a genetic connective tissue disorder that I have.
www.shelevergreen.com
September 7, 2024 at 10:25 PM
Merch shop is up! Original art by me. Currently only have the "Think Zebra" line available, but more designs coming soon.
www.shelevergreen.com/category/all...
www.shelevergreen.com/category/all...
I really hope Ed Yong is trolling us between bird shots.
I’m Just So Overjoyed With All This Immunity All My Infections Are Giving Me.
September 6, 2024 at 7:04 PM
I really hope Ed Yong is trolling us between bird shots.