khadijah | 25 | oregon | white | muslim | disabled/chronically ill | bisexual | trans | she/they | we love and respect marie kondo in this household | four seasons total landscaping
getting older as a kid is like yippee!! wahoo yay!! but then immediately as u enter ur early twenties ur like whoa lol hold on wait wait hold upa minute stop
[image description: a tweet by user @/CHIPANIMUS that reads “What happens in your head when you do 27 + 48? PLEASE respond I’m tryna see something”. end id.]
I need the “ten bricks” video can you send it to me if you have it. If you know what I mean you know what I mean. What? Twelve bricks! Oh my god something something
Earlier today I was reading a study about the structural differences in a hypermobile person’s brain, the differences being larger amygdala, a smaller anterior cingulate cortex, as well as the superior temporal cortex and gyrus diminishing in volume with the worsening of the hypermobility. And like I don’t understand a lot of scientific journals but it sounded like they were describing autism? Like we already know it’s much more common and the areas that they describe a difference in are in charge of emotional regulation, sensory perception and communication. If anyone else is interested and can explain it, it’s this one
well, so I’m no scientist, but I did some snooping around and found this, which cites the study you linked directly:
“Moreover, Eccles et al. (56), reported structural brain differences between subjects with and without JH in areas involved in emotion processing, attention, cognitive control of pain, and negative emotions (bilateral amygdala, anterior cingulate, parietal lobe), as well as a negative correlation between JH and superior temporal volume, which is an area related to processing social and emotional signals. Differences in amygdala and superior temporal cortex anatomy have been also observed in autism (57).”
I think it’s important to note that this is a looser correlation, and may not quite suggest that what the authors found was autism. There’s no explanation in either paper of what exactly these areas of the brain do, and the authors of the original study do say that their results are a little contradictory to what’s been found in clinics. While this research does suggest a tentative link, the study size is too small and their definition of hypermobility possibly too broad for me to say this paper is definitively conclusive of anything.
Ok, thank you!! I’ll read the source that you gave me and read anything that they cited or are cited on and just enjoy this rabbit hole that I have fallen down.
yeah that’s a great place to start! and because of the way this kind of research tends to work, it’s not a bad idea to take a look at each author of a paper too. researchers tend to do a whole bunch of different research projects on roughly the same topic, making small advances on it each time. with eds research, it’s possible some of them are even clinicians at specialist clinics.
if you ever want more interesting paper recommendations, I have so many I’m dying to share!
Please share the papers! I have the week off school and I love reading about anything slightly related to eds
tried to make sure these are all open-access papers, but if you do have institutional access (usually through a university or academic workplace, but sometimes through a local library), let me know and i’ve got even more for you
so, papers:
https://www.painphysicianjournal.com/linkout?issn=&vol=23&page=429 - a review of current treatment options for heds patients and their efficacies. this one is an absolute favorite. it has its limitations, but the massive tables are so helpful - just take note of the “significance” column.
https://www.sciencedirect.com/science/article/pii/S2666639121000146 - this one is an overview of the diagnosis and treatment of shoulder instability, but it has some good information about management of general joint instability in hEDS. Please note that this has a few bloodless surgery pictures.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7786113/ - this is a (very dense) review of the known genetic causes of the different subtypes. theres also some good general information about EDS in here! for genetics, its also sometimes useful to use a genetic database such as Varsome, but these are also dense and can be hard for someone without training to navigate.
https://www.frontiersin.org/articles/10.3389/fnhum.2017.00283/full - this one is an intervention study, where researchers attempted to improve the balance of people with hEDS. The data is a bit variable but promising for those who struggle more with proprioception.
additionally, a great place to find good research on any EDS is the Ehlers Danlos Society, which has a ton of great resources for all reading levels. I’m especially fond of their YouTube lectures. These are intended for a non-expert audience, but are still very technical. Additionally, its pretty easy to look up the speakers and their publications to find more about the topic. One I watched recently was this one: https://youtu.be/zQh0PeyZvxY
let me know what you think, or if you have any questions you think I might be able to answer (i’m definitely not an expert tho, just a very passionate reader)
This is incredible I’m always happy to read more!!!! I also have access to some databases through school and was going to check there anyways so go ahead and add more!
just wanna pipe in to say that the Ehlers-Danlos Society is widely considered in the EDS community to kind of be the “Autism Speaks” type-group for EDS research. They silence and block a lot of patients on social media in response to well-founded criticisms of their methodologies and unspoken agendas. In other words be very wary of EDS research and and don’t trust the Society
Here’s a very long twitter thread with receipts about a lot of the crap they’ve done. I recommend you read it all to the end. Oh and also it is already widely accepted by the patient community that autism is highly correlated with EDS regardless of what studies say or find, just considering by how many autistic people are diagnosed with some form of EDS or are otherwise symptomatically hypermobile, or vice versa. PEACE OUT ✌️
Earlier today I was reading a study about the structural differences in a hypermobile person’s brain, the differences being larger amygdala, a smaller anterior cingulate cortex, as well as the superior temporal cortex and gyrus diminishing in volume with the worsening of the hypermobility. And like I don’t understand a lot of scientific journals but it sounded like they were describing autism? Like we already know it’s much more common and the areas that they describe a difference in are in charge of emotional regulation, sensory perception and communication. If anyone else is interested and can explain it, it’s this one
well, so I’m no scientist, but I did some snooping around and found this, which cites the study you linked directly:
“Moreover, Eccles et al. (56), reported structural brain differences between subjects with and without JH in areas involved in emotion processing, attention, cognitive control of pain, and negative emotions (bilateral amygdala, anterior cingulate, parietal lobe), as well as a negative correlation between JH and superior temporal volume, which is an area related to processing social and emotional signals. Differences in amygdala and superior temporal cortex anatomy have been also observed in autism (57).”
I think it’s important to note that this is a looser correlation, and may not quite suggest that what the authors found was autism. There’s no explanation in either paper of what exactly these areas of the brain do, and the authors of the original study do say that their results are a little contradictory to what’s been found in clinics. While this research does suggest a tentative link, the study size is too small and their definition of hypermobility possibly too broad for me to say this paper is definitively conclusive of anything.
Ok, thank you!! I’ll read the source that you gave me and read anything that they cited or are cited on and just enjoy this rabbit hole that I have fallen down.
yeah that’s a great place to start! and because of the way this kind of research tends to work, it’s not a bad idea to take a look at each author of a paper too. researchers tend to do a whole bunch of different research projects on roughly the same topic, making small advances on it each time. with eds research, it’s possible some of them are even clinicians at specialist clinics.
if you ever want more interesting paper recommendations, I have so many I’m dying to share!
Please share the papers! I have the week off school and I love reading about anything slightly related to eds
tried to make sure these are all open-access papers, but if you do have institutional access (usually through a university or academic workplace, but sometimes through a local library), let me know and i’ve got even more for you
so, papers:
https://www.painphysicianjournal.com/linkout?issn=&vol=23&page=429 - a review of current treatment options for heds patients and their efficacies. this one is an absolute favorite. it has its limitations, but the massive tables are so helpful - just take note of the “significance” column.
https://www.sciencedirect.com/science/article/pii/S2666639121000146 - this one is an overview of the diagnosis and treatment of shoulder instability, but it has some good information about management of general joint instability in hEDS. Please note that this has a few bloodless surgery pictures.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7786113/ - this is a (very dense) review of the known genetic causes of the different subtypes. theres also some good general information about EDS in here! for genetics, its also sometimes useful to use a genetic database such as Varsome, but these are also dense and can be hard for someone without training to navigate.
https://www.frontiersin.org/articles/10.3389/fnhum.2017.00283/full - this one is an intervention study, where researchers attempted to improve the balance of people with hEDS. The data is a bit variable but promising for those who struggle more with proprioception.
additionally, a great place to find good research on any EDS is the Ehlers Danlos Society, which has a ton of great resources for all reading levels. I’m especially fond of their YouTube lectures. These are intended for a non-expert audience, but are still very technical. Additionally, its pretty easy to look up the speakers and their publications to find more about the topic. One I watched recently was this one: https://youtu.be/zQh0PeyZvxY
let me know what you think, or if you have any questions you think I might be able to answer (i’m definitely not an expert tho, just a very passionate reader)
This is incredible I’m always happy to read more!!!! I also have access to some databases through school and was going to check there anyways so go ahead and add more!
just wanna pipe in to say that the Ehlers-Danlos Society is widely considered in the EDS community to kind of be the “Autism Speaks” type-group for EDS research. They silence and block a lot of patients on social media in response to well-founded criticisms of their methodologies and unspoken agendas. In other words be very wary of EDS research and and don’t trust the Society
![bitribbles:
“[image description: a tweet by user @/CHIPANIMUS that reads “What happens in your head when you do 27 + 48? PLEASE respond I’m tryna see something”. end id.]
”](https://64.media.tumblr.com/a9a961cab87c70b0d65bbfe558ed5559/901b14d6ea0207a0-45/s500x750/dbfa803440211072f5562204d1c8570ad7e07cc7.jpg)
ALT