i find the overlap between trans people and people living with EDS, even if it's mostly anecdotal as of now, very interesting. my hypothesis is that EDS and hypermobility in general is more prevalent among autistic people (there is possibly a physiological link there), and a higher percentage of autistic people are found in the trans community than the general population (possibly due to the unique ways autistic people experience gender), so there ends up being a weirdly (relatively) substantial number of trans people with EDS
Very intriguing to hear your perspective. Thanks for sharing! It is definitely an interesting topic, and we are happy to continue this dialogue with folks who are also noticing an overlap!
Came here just to say the same things! Maybe it's also linked with traumatic experience such as living systemic opression wich of course inclued both trans and autistic people.
As an autistic trans person with EDS, this is also my hypothesis. I think a BIG part of it is that autistic people are more likely to question social norms and social expectations including with regard to gender. We also tend to be more inquisitive and introspective, and I think this all comes together in not necessarily being more likely to be trans, but being more likely to realize we ARE trans. It's not uncommon at all for people to suppress gender dysphoria or the desire to look like a different gender than assigned at birth. When I was younger I thought my dysphoria was a fear of gaining fat because it was the fat redistribution and progress of gaining curves that was causing me so much anguish. I also thought that I was uncomfortable with girly things because of internalized misogyny and trauma. Realizing I was trans made a huge difference, and now as an adult who's been out as trans for something like 2 or 3 years, the dysphoria continues to reduce as supportive people in my life correctly gender me as nonbinary and gender neutral. Anyway I went on a tangent, but basically I think there are more autistic trans people simply because we are more likely to question being assigned gender and stereotypes and expectations, so we simply are more likely to realize we are trans. We can also simply have a different experience of gender, with it being a social construct and all, which ends up with us realizing we don't fit either box. I personally didn't know that people actually identified with their gender or thought of the name and pronouns they were called as anything more than a predetermined noise to get your attention or refer to you. I didn't realize that people hear their name and go "yes that's me", or genuinely think of themselves as a man or woman. Finding out that trans people exist and therefore people must feel gender enough to go through everything with being trans, and that I was the outlier all along. Eventually I stumbled upon the labels nonbinary and agender and went "oh. This is how it feels when you have a name for how you actually experience gender. It simply feels correct thinking of yourself in that way" and then I started to unravel all of the years of extreme dissociation and depersonalization and discover that the numbness was hiding the pain I felt every time I was gendered as a girl. Ah I rambled again. If you get this far, well done! I apologize for being so wordy, I'm also ADHD and only slept like 5h last night and thus my brain is half cooked gooey scrambled eggs. One last thing: I know a shocking number of autistic trans people, mainly nonbinary, and like at least 10 of us have some form of EDS or at the least HSD (which I think of as simply another form of EDS that hasn't been accepted as such, when HSD manifests with systemic conditions that tend to be comorbid with EDS) I've discussed this exact thing, the EDS-autism-trans link with a number of them, and they've always agreed with my theory when they think about their personal life experiences as well as that of other trans and autistic people they know. I'd be interested to find out why EDS and autism are linked though! What's the connection between a collagen disorder and a brain that processes things in a different manner from the average person? Does it have to do with their origins? Or is there a collagen related mechanism in autism, potentially one that affects the structures that collect and process sensory information? I know I have allodynia and that could be from autistic hypersensitive skin, but it could also be from minor nerve damage from being stretched too far which can cause nerve sensitivity, pain, or numbness. But which is the cause? Do they both contribute? It's questions like these that make me wish I went to uni so I could be involved in studies (that are actually ethical to autistic test subjects, and not looking for cures)
@Daze - This is exactly what I was wondering as well. I'm a transmasc autistic person with a joint hypermobility disorder (possibly EDS), and as Dr. Mosser was talking about this, I wondered whether many of these patients he was referring to were autistic as well. I'm curious as to the possibility of there being an indirect link between EDS (/hypermobility disorders in general) and transgenderism via autism. There's another factor I'm thinking could contribute to the number of EDS sufferers seeking top surgery, if there are many others with a similar situation to mine. Due to the disorder, I have chronic back & neck pain... and the size of my chest has a big effect on the pain (my weight fluctuates a lot, so I observe the difference it makes). I'd like surgery for this reason alone, even if gender wasn't an issue. Additionally, the pain makes it impossible for me to bind/tape without too much discomfort, so those options are not good for me-leaving surgery as my only good option. So, a good set of hypotheses could be that so many EDS sufferers seek top surgery because: 1) Autism may be linked to both transgenderism and joint disorders such as EDS, giving the latter two an indirect link; and 2) Trans people with EDS may be more likely to seek top surgery than those without, due to (a) their chest causing physical pain on top of dysphoria, and/or (b) binding or taping being more uncomfortable than average for them due to the disorder.
I'm not Autistic, but I have ADHD & the other two members of the triad, hahahah. I recently did some digging into literature about EDS & they believe that many cases of HSD & hEDS are related to the MTHFR gene -- poor folate metabolism & high homocysteine levels causing degradation in collagen-based tissues. It's not 100% proven yet, but it's a potential link!! And I've seen MTHFR polymorphisms linked to ADHD & Autism as well. But I definitely agree that the trans aspect is probably not a biological link... Perhaps it's partly as you said: having a tenuous relationship w/ societal ideals & structures allows us to recognize & become ourselves in a more holistic way, at odds w/ those expectations. Not that neurodivergence is any more enlightening than being neurotypical! But that's just how I see it.
there's also a lot of afab folks living with eds who access t not only for gender affirmation but to help with joint pain. i know a couple whose doctor's have decided to do case studies to learn more!
I've found that T has increased muscle strength which supports my joints better, and it's raised my chronically low blood pressure so now POTS doesn't make me almost pass out all the time because my blood pressure doesn't dip so far into the danger zone
@@Alex-fc8xn I started T a year or so ago & while there have been SOME benefits -- my joints are less likely to subluxate & my POTS is less unpredictable due to increased blood volume -- my base pain & fatigue levels haven't really gone down. But I try to exercise more often, regardless, because I want to keep my joints/muscles in a good symbiosis & hopefully things will improve even more [I'm cautiously optimistic]. I will say that I ACTUALLY have to stretch now because more muscles = less flexibility = muscle spasms & bad posture if you're not careful, hahahah.
@@ZijnShayatanica yeah my fatigue and pain are still pretty bad, I just have slightly more joint stability and my POTS rarely makes me almost pass out from standing too fast. That said, I DO have issues with overheating now when I used to be always cold and oh boy is that rough for my POTS. Lots of brain fog and fatigue, wearing a mask in public to avoid COVID makes my brain mush from overheating (I'm a mouth breather because my nose was blocked for 6 years as a kid until my adenoids were removed at 12, so I still breathe through my mouth more than my nose because it feels more natural. Unfortunately my breath is warm which is trapped by the mask and makes me heat up.) I've also noticed my skin is more fragile, I developed stretch marks even in parts of my body that haven't grown like the inside of my elbows, and any scars I already had have flattened out and lost density. So the reduced collagen in my skin has definitely made it structurally weaker. My wound healing is also a bit worse and all of my new scars are weak/flimsy and slightly transparent almost. It makes me wonder if healing from future top surgery would be improved by pausing HRT so my body produces more collagen and the scars heal faster and form stronger tissue that can better withstand the early healing process when scars can end up stretched or damaged from arm movement. And improved elasticity from E could help if I do get peri so the skin can tighten and heal properly instead of being loose and requiring excess skin to be removed. Although, that would also mean that the bed rest would worsen my POTS and joint stability a lot faster as muscle mass is lost and blood volume is no longer boosted. So it's kind of a toss up between the physical wound healing vs the deconditioning and loss of strength/stability and having to slowly build that back up afterwards.
I've noticed how many trans EDSers there are, but i'd figured it was just because i'm in both communities. Fascinating that you've seen it! Thank you so much for this video. It's something I've been worried about
It really has been fascinating to observe the prevalence within community. Please do not hesitate to reach out with any questions! We can be reached here, by DM on Instagram or Facebook, or at info@genderconfirmation.com.
As a non-binary person with Hypermobility Joint Syndrome, thank you so much for this information! I should be getting my top surgery in Spain sometime this fall, and I'm glad to know that - on average - the healing for people with my joint differences heal well!
@@schlehehe8371 I'm so glad to hear you healed up nice!! I have top surgery coming up next month [AAAAAAAAAAAH!!] & I've vacillated between worry & feeling confident because my top surgeon has worked on several people w/ EDS & knows to do shit like multiple layers of sutures to prevent wound dehiscence.
I've just started learning about Hypermobility Spectrum Disorder, in suspecting that I fall somewhere on this spectrum (more on the mild side, not as extreme as EDS) and doing my own reading in articles, there is a significant amount of literature that reports an overrepresentation of neurodivergent and AFAB patients that live with some form of hypermobility or EDS. I just got a letter from my insurance that I'm approved for top surgery and I'm glad that hypermobility seems to not affect results, especially if my suspicion is correct.
Thank you for making this video! I hope to get periareolar top surgery in the coming years (cause wait lists are forever in Canada during the pandemic) and I was concerned about results, especially scarring or poor healing. I know of a trans autistic eds TH-camr called Aaron Ansuini who has a video on his top surgery in regards to how EDS affected it, but I believe he had double incision which is considerably different. You may find his videos on his top surgery process interesting to see it described from the patient perspective.
I suspect I have EDS (seeking a rheumatologist appointment soon), and had top surgery years ago. During healing, my sutures opened up and there was a hole the size of a quarter in my chest. the scar is as wide as a half dollar at its thickest now, it just smoothed over and can't grow hair. i wonder what can cause results like this? can't say the scar bothers me much, but i don't like the fact that i called what would happen. 😂 maybe there are some preventative measures my surgeon didn't take, since i had no diagnoses at the time.
Hi there, I'm trans, non-binary, autism spectrum, have had top surgery around 5 years ago. I also have "undifferentiated mixed connective tissue disorder", sometimes manifests EDS but it's not in my official diagnosis yet (undifferentiated just means it hasn't made up it's mind yet from what my rheumatologist says) . My top surgery went well, I didn't have much trouble except mild loss of range of motion. The pain I used to have is mostly gone from the weight/posture/hiding myself like a turtle for roughly 25 years by slouching. I hope someone will look into this as well, would be very interesting if there was some sort of connection for sure! Best wishes to all of you out there!
Hi! I wanted to ask if breast implants would be okay with this condition? And also I have a misaligned jaw, I wanted to get surgery for this, would it be okay?
The same applies for breast implants as it does for top surgery! Jaw surgery would likely need to be discussed with your PCP or at your consultation with us.
Do you know any surgeons who work with EDS patients who work in New England? I'd love to see you but traveling across the country is expensive. Also a lot of people with EDS have autism and more than 1/3 of autistic people are trans.
Thanks for reaching out! For providers in New England, we’re not directly familiar, but we’d recommend checking out mytranshealth.com for a list of healthcare providers.
i find the overlap between trans people and people living with EDS, even if it's mostly anecdotal as of now, very interesting. my hypothesis is that EDS and hypermobility in general is more prevalent among autistic people (there is possibly a physiological link there), and a higher percentage of autistic people are found in the trans community than the general population (possibly due to the unique ways autistic people experience gender), so there ends up being a weirdly (relatively) substantial number of trans people with EDS
Very intriguing to hear your perspective. Thanks for sharing! It is definitely an interesting topic, and we are happy to continue this dialogue with folks who are also noticing an overlap!
Came here just to say the same things! Maybe it's also linked with traumatic experience such as living systemic opression wich of course inclued both trans and autistic people.
As an autistic trans person with EDS, this is also my hypothesis. I think a BIG part of it is that autistic people are more likely to question social norms and social expectations including with regard to gender. We also tend to be more inquisitive and introspective, and I think this all comes together in not necessarily being more likely to be trans, but being more likely to realize we ARE trans. It's not uncommon at all for people to suppress gender dysphoria or the desire to look like a different gender than assigned at birth. When I was younger I thought my dysphoria was a fear of gaining fat because it was the fat redistribution and progress of gaining curves that was causing me so much anguish. I also thought that I was uncomfortable with girly things because of internalized misogyny and trauma.
Realizing I was trans made a huge difference, and now as an adult who's been out as trans for something like 2 or 3 years, the dysphoria continues to reduce as supportive people in my life correctly gender me as nonbinary and gender neutral.
Anyway I went on a tangent, but basically I think there are more autistic trans people simply because we are more likely to question being assigned gender and stereotypes and expectations, so we simply are more likely to realize we are trans. We can also simply have a different experience of gender, with it being a social construct and all, which ends up with us realizing we don't fit either box. I personally didn't know that people actually identified with their gender or thought of the name and pronouns they were called as anything more than a predetermined noise to get your attention or refer to you. I didn't realize that people hear their name and go "yes that's me", or genuinely think of themselves as a man or woman. Finding out that trans people exist and therefore people must feel gender enough to go through everything with being trans, and that I was the outlier all along. Eventually I stumbled upon the labels nonbinary and agender and went "oh. This is how it feels when you have a name for how you actually experience gender. It simply feels correct thinking of yourself in that way" and then I started to unravel all of the years of extreme dissociation and depersonalization and discover that the numbness was hiding the pain I felt every time I was gendered as a girl.
Ah I rambled again. If you get this far, well done! I apologize for being so wordy, I'm also ADHD and only slept like 5h last night and thus my brain is half cooked gooey scrambled eggs.
One last thing: I know a shocking number of autistic trans people, mainly nonbinary, and like at least 10 of us have some form of EDS or at the least HSD (which I think of as simply another form of EDS that hasn't been accepted as such, when HSD manifests with systemic conditions that tend to be comorbid with EDS)
I've discussed this exact thing, the EDS-autism-trans link with a number of them, and they've always agreed with my theory when they think about their personal life experiences as well as that of other trans and autistic people they know. I'd be interested to find out why EDS and autism are linked though! What's the connection between a collagen disorder and a brain that processes things in a different manner from the average person? Does it have to do with their origins? Or is there a collagen related mechanism in autism, potentially one that affects the structures that collect and process sensory information? I know I have allodynia and that could be from autistic hypersensitive skin, but it could also be from minor nerve damage from being stretched too far which can cause nerve sensitivity, pain, or numbness. But which is the cause? Do they both contribute? It's questions like these that make me wish I went to uni so I could be involved in studies (that are actually ethical to autistic test subjects, and not looking for cures)
@Daze - This is exactly what I was wondering as well. I'm a transmasc autistic person with a joint hypermobility disorder (possibly EDS), and as Dr. Mosser was talking about this, I wondered whether many of these patients he was referring to were autistic as well. I'm curious as to the possibility of there being an indirect link between EDS (/hypermobility disorders in general) and transgenderism via autism.
There's another factor I'm thinking could contribute to the number of EDS sufferers seeking top surgery, if there are many others with a similar situation to mine. Due to the disorder, I have chronic back & neck pain... and the size of my chest has a big effect on the pain (my weight fluctuates a lot, so I observe the difference it makes). I'd like surgery for this reason alone, even if gender wasn't an issue. Additionally, the pain makes it impossible for me to bind/tape without too much discomfort, so those options are not good for me-leaving surgery as my only good option.
So, a good set of hypotheses could be that so many EDS sufferers seek top surgery because: 1) Autism may be linked to both transgenderism and joint disorders such as EDS, giving the latter two an indirect link; and 2) Trans people with EDS may be more likely to seek top surgery than those without, due to (a) their chest causing physical pain on top of dysphoria, and/or (b) binding or taping being more uncomfortable than average for them due to the disorder.
I'm not Autistic, but I have ADHD & the other two members of the triad, hahahah. I recently did some digging into literature about EDS & they believe that many cases of HSD & hEDS are related to the MTHFR gene -- poor folate metabolism & high homocysteine levels causing degradation in collagen-based tissues. It's not 100% proven yet, but it's a potential link!! And I've seen MTHFR polymorphisms linked to ADHD & Autism as well.
But I definitely agree that the trans aspect is probably not a biological link... Perhaps it's partly as you said: having a tenuous relationship w/ societal ideals & structures allows us to recognize & become ourselves in a more holistic way, at odds w/ those expectations. Not that neurodivergence is any more enlightening than being neurotypical! But that's just how I see it.
there's also a lot of afab folks living with eds who access t not only for gender affirmation but to help with joint pain. i know a couple whose doctor's have decided to do case studies to learn more!
Interesting! Thank you for sharing that with us.
I've found that T has increased muscle strength which supports my joints better, and it's raised my chronically low blood pressure so now POTS doesn't make me almost pass out all the time because my blood pressure doesn't dip so far into the danger zone
@@Alex-fc8xn me too! my hypotension is much better since taking T
@@Alex-fc8xn I started T a year or so ago & while there have been SOME benefits -- my joints are less likely to subluxate & my POTS is less unpredictable due to increased blood volume -- my base pain & fatigue levels haven't really gone down. But I try to exercise more often, regardless, because I want to keep my joints/muscles in a good symbiosis & hopefully things will improve even more [I'm cautiously optimistic]. I will say that I ACTUALLY have to stretch now because more muscles = less flexibility = muscle spasms & bad posture if you're not careful, hahahah.
@@ZijnShayatanica yeah my fatigue and pain are still pretty bad, I just have slightly more joint stability and my POTS rarely makes me almost pass out from standing too fast. That said, I DO have issues with overheating now when I used to be always cold and oh boy is that rough for my POTS. Lots of brain fog and fatigue, wearing a mask in public to avoid COVID makes my brain mush from overheating (I'm a mouth breather because my nose was blocked for 6 years as a kid until my adenoids were removed at 12, so I still breathe through my mouth more than my nose because it feels more natural. Unfortunately my breath is warm which is trapped by the mask and makes me heat up.)
I've also noticed my skin is more fragile, I developed stretch marks even in parts of my body that haven't grown like the inside of my elbows, and any scars I already had have flattened out and lost density. So the reduced collagen in my skin has definitely made it structurally weaker. My wound healing is also a bit worse and all of my new scars are weak/flimsy and slightly transparent almost. It makes me wonder if healing from future top surgery would be improved by pausing HRT so my body produces more collagen and the scars heal faster and form stronger tissue that can better withstand the early healing process when scars can end up stretched or damaged from arm movement. And improved elasticity from E could help if I do get peri so the skin can tighten and heal properly instead of being loose and requiring excess skin to be removed. Although, that would also mean that the bed rest would worsen my POTS and joint stability a lot faster as muscle mass is lost and blood volume is no longer boosted. So it's kind of a toss up between the physical wound healing vs the deconditioning and loss of strength/stability and having to slowly build that back up afterwards.
I've noticed how many trans EDSers there are, but i'd figured it was just because i'm in both communities. Fascinating that you've seen it! Thank you so much for this video. It's something I've been worried about
It really has been fascinating to observe the prevalence within community. Please do not hesitate to reach out with any questions! We can be reached here, by DM on Instagram or Facebook, or at info@genderconfirmation.com.
As a non-binary person with Hypermobility Joint Syndrome, thank you so much for this information! I should be getting my top surgery in Spain sometime this fall, and I'm glad to know that - on average - the healing for people with my joint differences heal well!
Thank you for sharing! Happy to hear you found this video to be helpful. Best of luck to you in your journey and hope you have a great day! ♥️
how did it go?
@@bugguyonline It went great! I'm one year post-op and have healed fantastically!
@@schlehehe8371 I'm so glad to hear you healed up nice!! I have top surgery coming up next month [AAAAAAAAAAAH!!] & I've vacillated between worry & feeling confident because my top surgeon has worked on several people w/ EDS & knows to do shit like multiple layers of sutures to prevent wound dehiscence.
I've just started learning about Hypermobility Spectrum Disorder, in suspecting that I fall somewhere on this spectrum (more on the mild side, not as extreme as EDS) and doing my own reading in articles, there is a significant amount of literature that reports an overrepresentation of neurodivergent and AFAB patients that live with some form of hypermobility or EDS. I just got a letter from my insurance that I'm approved for top surgery and I'm glad that hypermobility seems to not affect results, especially if my suspicion is correct.
This is awesome info! Thank you for making this!
Thank you for making this video! I hope to get periareolar top surgery in the coming years (cause wait lists are forever in Canada during the pandemic) and I was concerned about results, especially scarring or poor healing. I know of a trans autistic eds TH-camr called Aaron Ansuini who has a video on his top surgery in regards to how EDS affected it, but I believe he had double incision which is considerably different. You may find his videos on his top surgery process interesting to see it described from the patient perspective.
Thank you so much for posting these videos! I was wondering though, will Dr. Facque be doing any of these videos as well?
Absolutely! Dr. Facque is in the process of recording some Q&A's as well. Stay tuned! :)
So what I'm hear is that it makes sense that both my joints and my gender are more flexible than the general population
I suspect I have EDS (seeking a rheumatologist appointment soon), and had top surgery years ago. During healing, my sutures opened up and there was a hole the size of a quarter in my chest. the scar is as wide as a half dollar at its thickest now, it just smoothed over and can't grow hair.
i wonder what can cause results like this? can't say the scar bothers me much, but i don't like the fact that i called what would happen. 😂
maybe there are some preventative measures my surgeon didn't take, since i had no diagnoses at the time.
Can you make a video addressing psoriasis/eczema & top surgery?
Thank you so much for the suggestion! We will add it to our list of topics.
Hi there, I'm trans, non-binary, autism spectrum, have had top surgery around 5 years ago. I also have "undifferentiated mixed connective tissue disorder", sometimes manifests EDS but it's not in my official diagnosis yet (undifferentiated just means it hasn't made up it's mind yet from what my rheumatologist says) . My top surgery went well, I didn't have much trouble except mild loss of range of motion. The pain I used to have is mostly gone from the weight/posture/hiding myself like a turtle for roughly 25 years by slouching. I hope someone will look into this as well, would be very interesting if there was some sort of connection for sure! Best wishes to all of you out there!
Hi! I wanted to ask if breast implants would be okay with this condition? And also I have a misaligned jaw, I wanted to get surgery for this, would it be okay?
The same applies for breast implants as it does for top surgery! Jaw surgery would likely need to be discussed with your PCP or at your consultation with us.
I was wondering about this was so happy when I saw this vid
You will also see some psychology papers noting actual brain differences in those with EDS… the sizes of the amygdala, for example.
Do you know any surgeons who work with EDS patients who work in New England? I'd love to see you but traveling across the country is expensive. Also a lot of people with EDS have autism and more than 1/3 of autistic people are trans.
Thanks for reaching out! For providers in New England, we’re not directly familiar, but we’d recommend checking out mytranshealth.com for a list of healthcare providers.
@@genderconfirmationcenter thank you so much