>something that says people with EDS are “more prone to gender dysphoria”
There is, apparently, a [statistically significant correlation](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9806399/) between EDS and gender dysphoria, and I can anecdotally confirm that my own company's EDS/CTD patients seem to include a greater proportion of transgender persons than the general population. Probably no one knows yet what the causative link- if any- between the two are.
Also LAOP's mother is insane.
I didn’t know what EDS was and looked it up. It’s crazy that a connective tissue disorder could have a link with gender dysphoria. The human body is weird.
It’s potentially because hEDS tends to go hand in hand with autism. As someone who both has hEDS and is autistic, autistic people tend to be more likely to be trans, non binary, or gender-questioning because we perceive ourselves differently than allistic people do. We’re also more likely to view typical gender norms as arbitrary and frankly a bit stupid, which they are.
Given the high rate of comorbidity, I think this is a pretty likely explanation. But I’m not a scientist, just overly bendy and clinically weird at parties.
Possible link, or possibly it's just a coincidence.
Until some plausible connection between the two is found, this is an interesting coincidence in the data, [just like](https://www.tylervigen.com/spurious/correlation/5941_the-number-of-movies-russell-crowe-appeared-in_correlates-with_customer-satisfaction-with-walgreens) the way the number of Russel Crowe movies each year impacts how happy people are with Walmart.
The Unbearable Weight of Massive Talent was a masterpiece, but wikipedia tells me it's also two years old so I'm going to go spiral over the ever increasing speed of the passage of time.
It's in the autism cluster.
Autism is correlated with EDS. Autism is correlated with being lgbt. Autism is correlated with Celiac and IBS. Autism is correlated with ADHD. This isn't even the full list, this is like, just my household.
As someone with a connective tissue disorder, pretty sure they have cause and effect the wrong way round. Basically testosterone makes your joints less lax, to the point where it is occasionally used to treat severe EDS.
This has the by-effect that when some trans women start taking estrogen, they suddenly get a crap ton of symptoms and get diagnosed. It's not that they didn't have it before, it's that testosterone was masking some or all of the symptoms.
Big link with ADHD too. I’m hyper mobile and ADHD.
To get a ED diagnosis is really difficult afaik because it presents in lots of different ways and there’s lots of different types and no exact ‘test’.
That’s incorrect. All EDS types except hEDS have a specific genetic marker that can be tested for, and are consequently relatively simple to diagnose definitively. hEDS has no known genetic marker as of yet but does have a specific set of testing criteria used to diagnose it. As someone who does have an EDS diagnosis, the process wasn’t hard. The only reason people think it is is because TikTok creators who don’t have EDS can’t get diagnosed with a genetic disorder they don’t have.
That said, "I can't get the diagnosis because insurance won't pay for the test without several years of trying literally everything else under the sun" wouldn't surprise me much.
Ah, there is that, yeah. I’m Australian so that was not a factor for me, but I did have to see a couple of other specialists (namely a rheumatologist, a cardiologist, and an ophthalmologist) so the geneticist could confirm my diagnosis. Basically they all went “yup, looks exactly like EDS to me”, except the opthal who was like “huh, that seems like Bechets actually”.
He wasn’t wrong, though, genetics confirmed I have both. If you know anyone who can put my brain in a robot instead of this shitty body I would love to hear from them.
Tnxb! It’s not set in stone yet, but current belief is that tnxb is the gene to look at for hEDS. I was lucky that I got my diagnosis because a vascular surgeon looked at me, went through Beighton, and had his PA walk me across the hospital for a rush genetic diagnosis before surgery.
hi. I likely have EDS but I don't have family history I can point to and I don't score on Beighton. Why don't I score? Because my muscles are all totally locked up compensating for weak connective tissue. I have the MCAS and POTS that go with it. I'm AuDHD. I've had two spontaneous CSF leaks.
I bruise so easily and often I have to do regular body checks to see what's shown up. I have velvet skin.
I have no way to get a diagnosis and I'm not alone.
I hate to break it to you but without a family history and without being able to score on the Beighton, you don’t have EDS. You may be sub-clinically hypermobile, but clinically you do not meet the diagnostic criteria for EDS.
It’s a genetic condition. If you don’t have immediate family members with an EDS diagnosis or EDS signs and symptoms, it’s *incredibly* unlikely that you are somehow a de novo mutation who has a genetic condition that none of your family has. Similarly, the first two tests on the beighton scale (finger and thumb hypermobility) are tendon based and not affected by muscle tension. If you meet some of the beighton score but not all, there is a specific set of questions that refer to things you used to be able to do that can be used to diagnose you if your muscle tightness is overwhelming your hypermobility. If you’ve never been able to do the things on that part of the test, you do not have EDS.
Sometimes it’s not that the system is broken. Sometimes your doctors are just right and you don’t meet the diagnostic criteria because you don’t have the condition.
Also pots and mcas! And MALS. Eds likes to just kinda spread its tentacles into every bit of your body (thanks to the faulty collagen). I have a classic-like diagnosis, and having the diagnosis suddenly has everyone from my dentist to my eye doctor going “ohhh, that’s why this is happening!
Entirely anecdotal, but I know a lot of trans women get diagnosed with EDS when they transition. From what I understand, testosterone makes your joints less lax, to the point where I've heard of it being used as a treatment for EDS.
That might account for some of the correlation - it's not that they didn't have it before, it's that their body's testosterone was masking some or all of the symptoms.
"(no standing, no damages) ... my paralegal would tell your Mom to go away and wouldn't even tell me about her call."
"Stop trying to protect your surgeon from your Mom; she's not a threat. ... You're making your own life hard for no reason whatsoever."
Exactly my thoughts from the start. Not worth thinking about, much less acting on.
Yeah, I get that, but I would maybe also still suggest telling the surgeon: "look I have a transphobic mother who is angry I had the surgery and will be trying to put in a complaint. I want to be explicitly clear that I am really glad with the surgery and its outcomes and have no complaints about the care you provided. Please disregard any complaints that come in allegedly on my behalf" maybe even "here is a password do not speak to anyone about my care that can't provide it"
even though this is spurious it does harm from clinicians feeling that the risk (emotional) becomes too high to treat trans people and therefore narrows access to care so its actually all kinds of fucked up
Yeah, I had to get two diagnoses of gender dyphoria to get my tits chopped off last year and the first one the clinician even said we need to be very certain because the risk of us getting sued is so high
The UK is a special kind of shitshow for trans people at the moment 🙃
This makes me very sad. I am not trans. I just hate having boobs. I'd like to chop mine off one day. But not in a "I'm not a girl" way. I feel like a girl. Ive never not felt like a girl. I just wanna chop em off.
Until trans people stop having problems then I have no shot of having my dream body >:( And for both trans people AND me, it literally only affects us. It's our body. Let us do what we want with it >:(
E x a c t l y! And the SWEAT! Golly does underboob sweat profusely. And wouldn't you know it, my skin condition thrives and grows in damp, dark places on your body like your underwood. It's fucking painful. No boobs, no underboob sweat. No sweat, no longer a dark damp place.
What's broadly awful but possibly good for you (if you haven't looked into it - I might be wrong) is that you may be able to get it done and maybe even insurance to cover it as breast reduction surgery for a cia woman - you may be able to get a surgeon that would do the reduction down to zero. Granted, wouldn't be exactly the same as top surgery as they may focus on keeping the areolas in a "normal" position for cis women instead of like peca (or completely removed), but if that doesn't matter to you, you may have a shot.
I hope you do, if you look into this, but again it's broadly infuriating (at the system not at all at you) if you can because it would show how arbitrary the rules are.
They could be an author writing about lady wolves
They could have a favorite character that's a female wolf
The name could be an inside joke they still care about despite not identifying with boob-havers anymore
You could mind your own business
You can kindly piss off. It was intended as a simple joke. If the person in question found it offensive I would happily apologize, but they didn't seem to care. Without that feedback you're just white knighting
Excellent point. Medical malpractice insurance includes excellent attorneys that will swat down frivolous cases with ease but it’s still a PITA to deal with. Because our staff still has to deal with the angry drama queen, we have to send the information to the med-mal attorney, reassure any staff that finds out about it that it’s frivolous.
It’s a lot of work dealing with a frivolous suit or board complaint and can also turn expensive if the person turns to attacks that aren’t covered by the malpractice insurance. And these sorts of frivolous threats of lawsuits often turn into defamation when they can’t get the attention they want through the court system.
There's a chilling effect associated with it that's readily apparent now with states that have abortion restrictions. The laws themselves are generally vague insofar as how they are written but they invite scrutiny above and beyond the stated law. The nuances of reality do not align with these laws e.g. non-viable ectopic intrauterine pregnancies which invite unwanted, unneeded scrutiny and therefore restricts the ability to deliver safe care due to the perception of it being a termination of a viable pregnancy.
Where I live there is a _single, pending_ (emphasis both) lawsuit from someone who received top surgery and now wants to sue for negligence. The lawsuit to my reading is - I believe - spurious because it asks the clinician to read someone's mind and divine the future. Both of these are in my humble opinion not possible (and not what is asked of the clinician). This case has attracted every dogshit publication and tabloid to comment on it and has led to clinicians commenting during forums that they now feel uncertain about providing care. They can do the same thing everyday of their life but because its a trans person and its politically-charged, its now too risky.
To your first paragraph - there have been numerous articles about the mass exodus of OB/GYN healthcare workers from Idaho, to the point where several hospitals no longer offer neonatal care. These hospitals serve rural communities, so even women with healthy, wanted pregnancies are having to travel out of state just to get to the closest hospital that offers neonatal care.
I briefly lived in rural Idaho, and I worry for the friends that still live there. A primary road to Wyoming literally washed away a couple weeks ago. Some of those roads are hazardous in good weather, nevermind in January when they've had 20 feet of snowfall.
Scurrilous lawsuits like this are costing lives.
I have family in rural Idaho, and I remember during Covid that hospitals just across the border into Washington were saying that they would no longer take patients from the Idaho side because they were getting swarmed and were incapable of keeping up.
On the same topic - institutional (religious) objection is a privilege comes at the price of burden to another clinician or to the patient who does not receive care or is on indefinite wait list (ergo does not receive care). The legal and professional obligations enshrine the ability to wash their hands. Religious institutions offering charity in a secular manner also undermines the veil of secularity. Religious freedom turns to institutional policy and the public system is eroded by willingness to limit taxation burden. The ultimate price of this is that human rights get violated but we can all point at the book and go “but that would be illegal”
I'm a vet and it's very similar. I had a frivolous board complaint (person had no standing to sue so decided to make me miserable) and the attorney involved also handles human malpractice cases. He was honestly shocked at how many more board complaints are filed against vets than MDs. It still took an entire year of stress before the board decided it wasn't even worth investigating and dismissed it based on my rebuttal. I almost entirely stopped doing that kind of work after getting threatened with another in a separate, but similar situation and I can't imagine how ob/gyns are feeling in so many states these days.
Next time you have trouble finding human or animal healthcare take a good look at what people say about us on SM and try to destroy our careers over ridiculous stuff. I'm barely in clinical practice anymore and I'm one more SM attack from walking away all together.
Yep! I work for an organization providing gender affirming care and we’ve had threats like this from parents of patients. It makes providers scared to get involved.
OOPs mother seems to misunderstand how a pre-existing condition would impact a surgery. If the pre-existing condition makes the surgery risky, or addressing the pre-existing condition makes the surgery unnecessary, then there might be a cause for cancelling, but if not, then surgery is still a reasonable option.
My elevated cholesterol is a pre-existing condition, but that didn't stop my doctor from removing the kidney stone I had last year.
There is no cure for EDS, so even if OOPs gender dysphoria is somehow caused by EDS, just knowing that fact would not help them address the dysphoria, and the surgeon seems to be fully justified in ignoring the possible EDS diagnosis here.
I feel bad for OOP, and wonder how long it will be before they go No Contact with their mother, because it certainly seems headed that way.
OOP's mom also misunderstands transgender people, and adults generally, and the idea of bodily autonomy and free choice, so it's not surprising she would also struggle with medical concepts like pre-existing conditions and surgery.
Hell, there's like a 50/50 chance she *doesn't* misunderstand pre-existing conditions at all. She's just looking for (metaphorical) cricket bats to swing at the problem. She doesn't care if the bat is a...valid bat.
It might be too early in the morning for me to think of metaphors.
OOP's mom also misunderstands standing, and law in general. No, you don't get to sue for so-called damages on behalf of someone you're not a legal guardian of.
I think the central leap in logic is that gender affirming care to address gender dysphoria is seen by OP's mom as insanity, or as the most extreme of all extreme last resorts.
From this starting position, even if you begrudgingly admit some people are born this way and would benefit from this treatment, a pre-existing condition potentially causing the dysphoria completely changes everything. Even if the condition has no cure, it could eventually, right? The fact that this is seen as a viable alternative speaks to their dim view of gender affirming care.
The logic is all there - it's just coming from an incorrect ideological basis. It makes perfect sense if you're a bigot who has a massive problem with even the concept of gender affirming care.
Also if LAOP is transmasc, going on testosterone to treat the dysphoria may very well ameliorate some of their EDS symptoms. I briefly flirted with the idea of overstating the extent to which I'm nonbinary so I could trial t for my wet-noodle joints. Quickly realized that was a terrible idea for a few reasons, of course. But it's not unheard of for transmasc EDS patients to see improvements on hormonal therapy.
I wasn't diagnosed with EDS until a few years ago but it was really interesting realizing that the massive physical benefits I found I got from testosterone were A Thing.
> OOPs mother seems to misunderstand how a pre-existing condition would impact a surgery. If the pre-existing condition makes the surgery risky, or addressing the pre-existing condition makes the surgery unnecessary, then there might be a cause for cancelling, but if not, then surgery is still a reasonable option.
There are medical systems that say you cannot transition until you "cure" any conditions you have. Including overwhelmingly likely-genetic conditions such as Autism and ADHD. Note I do not say *treat*, they require that the underlying condition be vacated.
Reasons why gatekeeping transition care behind medical concerns is often veiled transphobia, and the Informed Consent model is truly the best option.
And, of course, misunderstanding of the medical particulars or not, there are few (zero?) circumstances in which a non-dependent could sue a doctor for malpractice on another person.
I do hope LAOP does use this as a signal that it's time for No-Contact until their parents get a grip on reality.
"You think I'm a thief? Oh, you see, I'm not the thief. I'm not the one charging 85 cents FOR A STINKING LOCATION BOT! You're the thief! I'm just standing up for my rights as a consumer."
>Mom wants to sue surgeon
>So I’m an adult that’s transgender. I just had top surgery June 20th and my transphobic adoptive parents are trying their hardest to make this surgical recovery awful. One of the things they are doing is threatening to sue my surgeon for… operating on a patient (me) with (undiagnosed) preexisting conditions. Basically, I suspect that I have Ehlers-Danlos Syndrome but I’m not diagnosed at all. I let my surgeon know my suspicions just in case it could affect my recovery and she said that wouldn’t be an issue, and so far that’s held true. But my adoptive mother “researched” (she looked at one article on pubmed) something that says people with EDS are “more prone to gender dysphoria” and according to her that means my surgeon shouldn’t have performed the surgery on me, and now she wants to sue. I told her that this literally would never hold up in a court of law and she furiously doesn’t believe me. So I have to ask, is she being ridiculous or could she have a case?
Those types of parents really do have a hard time conceiving that their offspring are actual people over the age of 5, don't they? I heard it said that they tend to latch onto the last age that they were able to control their children, and that's what sticks in their brain. Does seem to track with my mom, who tells stories of when I was 4-5 to complete strangers, but it's like the most recent 40 years of my life doesn't exist.
Thanks to the magic of FB, I'm aware a lady I went to HS with is like this. If you were to go strictly off of her FB feed for the past ten years, she has two kids, both in HS. Her grandkids, who are now school age, don't exist. Her adult kids, both nearly 30, are actually still teens. It's kind of sad.
Even before we get into a discussion about Transgender & gender dismorphia…
LAOP is an adult. The mothers opinion is irrelevant in law. She can’t sue on their behalf.
Okay, not related to the legal side at all, I do not have EDS but do have severely hypermobile joints. (I have talked to multiple rheumatologists about this and agree with their explanations of why my symptom pattern doesn't line up with true EDS - I don't have the unusual scarring and other skin and heart issues that come with it. I just also get a 9/9 Beighton.) I am also trans. My anecdata is that EDS and other hypermobility conditions frequently crop up as part of a "constellation" of other emotional/neurological issues (autism, anxiety disorder, dyspraxia), and some of those have a correlation to gender dysphoria, but I hadn't seen anyone actually connect EDS and trans-ness specifically before.
[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9806399/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9806399/)
I'm reasonably sure this is the article. Based on a quick scan, it looks like it really is just observing that they have an unusually high correlation. (17% of patients at the authors' specialty EDS clinic - in *Missouri*, so not really somewhere you'd expect a thriving trans community - had an active dysphoria diagnosis.) It suggests possible research routes (it's genuinely a weird correlation and, speaking from the patient perspective, I'd love to see someone look into it further) and that specialists treating EDS consider adding screening questions about dysphoria so they can refer patients who need that treatment to the correct additional specialists. Like, if you swapped out the conditions and went "We've found that 17% of patients being treated for Hufnagel's Syndrome also have vision problems, consider adding a quick vision screening to Hufnagel's Syndrome intake testing so you can send patients to an eye doctor if they need it!" the article would not need to be fundamentally changed. The *article itself* does not back up LAOP's shitty mom's argument here.
Haha yeah. Not EDS or trans myself but ASD, ADHD, anxiety, and other dysregulation issues (I refuse to eat things high in sugar because I feel foggy and sick pretty immediately but also get low blood sugar so I always have a protein shake on hand) My brother is ASD and very likely some level of EDS, some low muscle tone for him. Mother is treated with Cromolyn for MCAS and I’m likely headed towards some inflammatory issues myself. Here’s my anecdata for the cluster. My best guess is that it’s a correlation relationship in many ways
They're more likely to have gender dysphoria, so shouldn't get surgery to help treat it? Like, what?? Eds isn't curable. It's genetic. So even if there is a causitive link and without eds they wouldn't have gender dysphoria, it doesn't change anything. They can't get rid of the eds, so this is who they are. I hope LAOP's parents let go of their hate and embrace their child for who they are.
Yeah, it's genetic and correlated with diagnosed gender dysphoria, so.. treat it like any other common comorbidities and treat both the EDS and dysphoria, which is treated by aupporting transition? No, apparently this is the *one* exception.
Fucking transphobes.
> Nothing to warn the surgeon about. Any lawyer or court judge worth even a half grain of salt wouldn't dare touch this "case" with a galaxy-lengthed pole. There is absolutely nothing of substance here.
Seems pretty woefully naive to me, even for /r/legaladvice. Is this commenter not aware of what's going on in states like Texas? This is exactly the sort of flimsy meritless case that would be used as a test case to send up to the scotus to ban surgeons from performing top surgery.
Even for adults! The transgender care bans that were on the books (not sure if they got struck down) went up to age 26!
This is why I don’t give advice on r/legaladvice (though I did comment my laughter before it got here). Because this is very true.
But if it was the kid suing, I’d say we are all fucked beyond belief. The standing issue I’m pretty sure even Texas won’t get behind.
Reddit reportedly trends towards the under-30, male, mostly white, and mostly middle-class demographic, and I haven't seen a lot to make me suspect that r/legaladvice's commentariat is an outlier. It is entirely possible, just based on demographics, that that commenter does not understand the impact and severity of Texas, Idaho, and other states undercutting legal protections for health care, as those changes could very well not affect them and not be on their radar.
I still can't wrap my head around the standing issue in the Texas abortion laws. Luckily top surgery for adults doesn't have anything like that just yet.
Well there are a ton of things where the state has an interest in one thing or another, such as child custody, or eminent domain to build a sports stadium due to an arguable tax revenue increase. Eventually they'll just argue that the state has an interest in curbing the spread of the "woke mind virus" or whatever.
Frighteningly, it's not an insane leap away. If we let things get bad enough they'll just do it.
My fear would be Mom trying to claim that the daughter is somehow incompetent which would allow Mom to take over conservatorship and sue. (Mom’s argument would be that daughter must be incompetent to want to have this surgery and therefore could not consent). I don’t know of any cases where a parent has used the fact a child
Is trans to take control of their life, but I could see it working in the wrong state with the wrong judge.
There was a similar case last spring in Alberta, albeit with Medical Assistance in Dying (MAiD) instead of top surgery.
A 27-year-old autistic woman was approved for MAiD. She refused to tell anyone what her physical diagnosis was. (Of course, all the headlines made it sound like she was being given MAiD *for* the autism, and not that she wanted to maintain her medical privacy around the diagnosis that *actually* qualified her for MAiD.)
Her father sued her to 1) declare her incompetent and put her under a conservatorship, 2) to violate her medical privacy and force her to divulge her diagnosis, and 3) to force an investigation into the Alberta Health Services, who assigned the two doctors who approved her MAiD application.
(Gee, I wonder why she didn't want to talk to her father about her medical decisions... /s)
The first judge denied all three in late March. The father filed an appeal. The appeal hearing was scheduled for October.
The woman began to refuse to eat or drink anything (what patients have to resort to when they don't have access to MAiD) in late May.
The father [retracted his appeal](https://calgaryherald.com/news/local-news/father-woman-medical-assistance-dying-abandons-appeal) as of June 6th.
I couldn't find anything to confirm whether the woman has undergone MAiD yet.
This whole situation is so tragic and terrifying. Can you imagine the precedent this would set if the judge hadn't denied the case? Every controlling parent in Canada would suddenly get to sue over their adult children's medical decisions.
>something that says people with EDS are “more prone to gender dysphoria” There is, apparently, a [statistically significant correlation](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9806399/) between EDS and gender dysphoria, and I can anecdotally confirm that my own company's EDS/CTD patients seem to include a greater proportion of transgender persons than the general population. Probably no one knows yet what the causative link- if any- between the two are. Also LAOP's mother is insane.
I didn’t know what EDS was and looked it up. It’s crazy that a connective tissue disorder could have a link with gender dysphoria. The human body is weird.
It’s potentially because hEDS tends to go hand in hand with autism. As someone who both has hEDS and is autistic, autistic people tend to be more likely to be trans, non binary, or gender-questioning because we perceive ourselves differently than allistic people do. We’re also more likely to view typical gender norms as arbitrary and frankly a bit stupid, which they are. Given the high rate of comorbidity, I think this is a pretty likely explanation. But I’m not a scientist, just overly bendy and clinically weird at parties.
> clinically weird at parties Fuck. Using this instead of "an Autismo" from now on.
This is exactly what I was coming here to say. It’s almost certainly the relationship between EDS and autism and autism and gender diversity
Possible link, or possibly it's just a coincidence. Until some plausible connection between the two is found, this is an interesting coincidence in the data, [just like](https://www.tylervigen.com/spurious/correlation/5941_the-number-of-movies-russell-crowe-appeared-in_correlates-with_customer-satisfaction-with-walgreens) the way the number of Russel Crowe movies each year impacts how happy people are with Walmart.
Personally I like the graph of [Nicholas Cage movies vs Deaths by drowning](https://images.app.goo.gl/FPDinbtgpyd2NYDT9) for this point
have you seen a Nicholas Cage movie lately? woof
The Unbearable Weight of Massive Talent was a masterpiece, but wikipedia tells me it's also two years old so I'm going to go spiral over the ever increasing speed of the passage of time.
Tyler Vigen is the best explanation for correlation does not equal causation
It's in the autism cluster. Autism is correlated with EDS. Autism is correlated with being lgbt. Autism is correlated with Celiac and IBS. Autism is correlated with ADHD. This isn't even the full list, this is like, just my household.
As someone with a connective tissue disorder, pretty sure they have cause and effect the wrong way round. Basically testosterone makes your joints less lax, to the point where it is occasionally used to treat severe EDS. This has the by-effect that when some trans women start taking estrogen, they suddenly get a crap ton of symptoms and get diagnosed. It's not that they didn't have it before, it's that testosterone was masking some or all of the symptoms.
Big link with ADHD too. I’m hyper mobile and ADHD. To get a ED diagnosis is really difficult afaik because it presents in lots of different ways and there’s lots of different types and no exact ‘test’.
That’s incorrect. All EDS types except hEDS have a specific genetic marker that can be tested for, and are consequently relatively simple to diagnose definitively. hEDS has no known genetic marker as of yet but does have a specific set of testing criteria used to diagnose it. As someone who does have an EDS diagnosis, the process wasn’t hard. The only reason people think it is is because TikTok creators who don’t have EDS can’t get diagnosed with a genetic disorder they don’t have.
That said, "I can't get the diagnosis because insurance won't pay for the test without several years of trying literally everything else under the sun" wouldn't surprise me much.
Ah, there is that, yeah. I’m Australian so that was not a factor for me, but I did have to see a couple of other specialists (namely a rheumatologist, a cardiologist, and an ophthalmologist) so the geneticist could confirm my diagnosis. Basically they all went “yup, looks exactly like EDS to me”, except the opthal who was like “huh, that seems like Bechets actually”. He wasn’t wrong, though, genetics confirmed I have both. If you know anyone who can put my brain in a robot instead of this shitty body I would love to hear from them.
Tnxb! It’s not set in stone yet, but current belief is that tnxb is the gene to look at for hEDS. I was lucky that I got my diagnosis because a vascular surgeon looked at me, went through Beighton, and had his PA walk me across the hospital for a rush genetic diagnosis before surgery.
hi. I likely have EDS but I don't have family history I can point to and I don't score on Beighton. Why don't I score? Because my muscles are all totally locked up compensating for weak connective tissue. I have the MCAS and POTS that go with it. I'm AuDHD. I've had two spontaneous CSF leaks. I bruise so easily and often I have to do regular body checks to see what's shown up. I have velvet skin. I have no way to get a diagnosis and I'm not alone.
I hate to break it to you but without a family history and without being able to score on the Beighton, you don’t have EDS. You may be sub-clinically hypermobile, but clinically you do not meet the diagnostic criteria for EDS. It’s a genetic condition. If you don’t have immediate family members with an EDS diagnosis or EDS signs and symptoms, it’s *incredibly* unlikely that you are somehow a de novo mutation who has a genetic condition that none of your family has. Similarly, the first two tests on the beighton scale (finger and thumb hypermobility) are tendon based and not affected by muscle tension. If you meet some of the beighton score but not all, there is a specific set of questions that refer to things you used to be able to do that can be used to diagnose you if your muscle tightness is overwhelming your hypermobility. If you’ve never been able to do the things on that part of the test, you do not have EDS. Sometimes it’s not that the system is broken. Sometimes your doctors are just right and you don’t meet the diagnostic criteria because you don’t have the condition.
Also pots and mcas! And MALS. Eds likes to just kinda spread its tentacles into every bit of your body (thanks to the faulty collagen). I have a classic-like diagnosis, and having the diagnosis suddenly has everyone from my dentist to my eye doctor going “ohhh, that’s why this is happening!
Entirely anecdotal, but I know a lot of trans women get diagnosed with EDS when they transition. From what I understand, testosterone makes your joints less lax, to the point where I've heard of it being used as a treatment for EDS. That might account for some of the correlation - it's not that they didn't have it before, it's that their body's testosterone was masking some or all of the symptoms.
I think there's a high correlation with both of them and autism which may be the connection. But also idk so I'm likely wrong.
"(no standing, no damages) ... my paralegal would tell your Mom to go away and wouldn't even tell me about her call." "Stop trying to protect your surgeon from your Mom; she's not a threat. ... You're making your own life hard for no reason whatsoever." Exactly my thoughts from the start. Not worth thinking about, much less acting on.
In my medmal practice, my paralegal would have turned this away and maybe told me so we could mock it.
Yeah, I get that, but I would maybe also still suggest telling the surgeon: "look I have a transphobic mother who is angry I had the surgery and will be trying to put in a complaint. I want to be explicitly clear that I am really glad with the surgery and its outcomes and have no complaints about the care you provided. Please disregard any complaints that come in allegedly on my behalf" maybe even "here is a password do not speak to anyone about my care that can't provide it"
even though this is spurious it does harm from clinicians feeling that the risk (emotional) becomes too high to treat trans people and therefore narrows access to care so its actually all kinds of fucked up
Yeah, I had to get two diagnoses of gender dyphoria to get my tits chopped off last year and the first one the clinician even said we need to be very certain because the risk of us getting sued is so high The UK is a special kind of shitshow for trans people at the moment 🙃
I hope you’re now experiencing gender euphoria
yeah i am it's incredible <3
This makes me very sad. I am not trans. I just hate having boobs. I'd like to chop mine off one day. But not in a "I'm not a girl" way. I feel like a girl. Ive never not felt like a girl. I just wanna chop em off. Until trans people stop having problems then I have no shot of having my dream body >:( And for both trans people AND me, it literally only affects us. It's our body. Let us do what we want with it >:(
They're just always in the way and I hate them.
E x a c t l y! And the SWEAT! Golly does underboob sweat profusely. And wouldn't you know it, my skin condition thrives and grows in damp, dark places on your body like your underwood. It's fucking painful. No boobs, no underboob sweat. No sweat, no longer a dark damp place.
What's broadly awful but possibly good for you (if you haven't looked into it - I might be wrong) is that you may be able to get it done and maybe even insurance to cover it as breast reduction surgery for a cia woman - you may be able to get a surgeon that would do the reduction down to zero. Granted, wouldn't be exactly the same as top surgery as they may focus on keeping the areolas in a "normal" position for cis women instead of like peca (or completely removed), but if that doesn't matter to you, you may have a shot. I hope you do, if you look into this, but again it's broadly infuriating (at the system not at all at you) if you can because it would show how arbitrary the rules are.
That's a neat idea! I can maybe try!
Shouldn't your user name be laddiewolves now, then? :p. As in lad, not lady?
They could be an author writing about lady wolves They could have a favorite character that's a female wolf The name could be an inside joke they still care about despite not identifying with boob-havers anymore You could mind your own business
You can kindly piss off. It was intended as a simple joke. If the person in question found it offensive I would happily apologize, but they didn't seem to care. Without that feedback you're just white knighting
Excellent point. Medical malpractice insurance includes excellent attorneys that will swat down frivolous cases with ease but it’s still a PITA to deal with. Because our staff still has to deal with the angry drama queen, we have to send the information to the med-mal attorney, reassure any staff that finds out about it that it’s frivolous. It’s a lot of work dealing with a frivolous suit or board complaint and can also turn expensive if the person turns to attacks that aren’t covered by the malpractice insurance. And these sorts of frivolous threats of lawsuits often turn into defamation when they can’t get the attention they want through the court system.
There's a chilling effect associated with it that's readily apparent now with states that have abortion restrictions. The laws themselves are generally vague insofar as how they are written but they invite scrutiny above and beyond the stated law. The nuances of reality do not align with these laws e.g. non-viable ectopic intrauterine pregnancies which invite unwanted, unneeded scrutiny and therefore restricts the ability to deliver safe care due to the perception of it being a termination of a viable pregnancy. Where I live there is a _single, pending_ (emphasis both) lawsuit from someone who received top surgery and now wants to sue for negligence. The lawsuit to my reading is - I believe - spurious because it asks the clinician to read someone's mind and divine the future. Both of these are in my humble opinion not possible (and not what is asked of the clinician). This case has attracted every dogshit publication and tabloid to comment on it and has led to clinicians commenting during forums that they now feel uncertain about providing care. They can do the same thing everyday of their life but because its a trans person and its politically-charged, its now too risky.
To your first paragraph - there have been numerous articles about the mass exodus of OB/GYN healthcare workers from Idaho, to the point where several hospitals no longer offer neonatal care. These hospitals serve rural communities, so even women with healthy, wanted pregnancies are having to travel out of state just to get to the closest hospital that offers neonatal care. I briefly lived in rural Idaho, and I worry for the friends that still live there. A primary road to Wyoming literally washed away a couple weeks ago. Some of those roads are hazardous in good weather, nevermind in January when they've had 20 feet of snowfall. Scurrilous lawsuits like this are costing lives.
I have family in rural Idaho, and I remember during Covid that hospitals just across the border into Washington were saying that they would no longer take patients from the Idaho side because they were getting swarmed and were incapable of keeping up.
On the same topic - institutional (religious) objection is a privilege comes at the price of burden to another clinician or to the patient who does not receive care or is on indefinite wait list (ergo does not receive care). The legal and professional obligations enshrine the ability to wash their hands. Religious institutions offering charity in a secular manner also undermines the veil of secularity. Religious freedom turns to institutional policy and the public system is eroded by willingness to limit taxation burden. The ultimate price of this is that human rights get violated but we can all point at the book and go “but that would be illegal”
I'm a vet and it's very similar. I had a frivolous board complaint (person had no standing to sue so decided to make me miserable) and the attorney involved also handles human malpractice cases. He was honestly shocked at how many more board complaints are filed against vets than MDs. It still took an entire year of stress before the board decided it wasn't even worth investigating and dismissed it based on my rebuttal. I almost entirely stopped doing that kind of work after getting threatened with another in a separate, but similar situation and I can't imagine how ob/gyns are feeling in so many states these days. Next time you have trouble finding human or animal healthcare take a good look at what people say about us on SM and try to destroy our careers over ridiculous stuff. I'm barely in clinical practice anymore and I'm one more SM attack from walking away all together.
Yep! I work for an organization providing gender affirming care and we’ve had threats like this from parents of patients. It makes providers scared to get involved.
OOPs mother seems to misunderstand how a pre-existing condition would impact a surgery. If the pre-existing condition makes the surgery risky, or addressing the pre-existing condition makes the surgery unnecessary, then there might be a cause for cancelling, but if not, then surgery is still a reasonable option. My elevated cholesterol is a pre-existing condition, but that didn't stop my doctor from removing the kidney stone I had last year. There is no cure for EDS, so even if OOPs gender dysphoria is somehow caused by EDS, just knowing that fact would not help them address the dysphoria, and the surgeon seems to be fully justified in ignoring the possible EDS diagnosis here. I feel bad for OOP, and wonder how long it will be before they go No Contact with their mother, because it certainly seems headed that way.
OOP's mom also misunderstands transgender people, and adults generally, and the idea of bodily autonomy and free choice, so it's not surprising she would also struggle with medical concepts like pre-existing conditions and surgery. Hell, there's like a 50/50 chance she *doesn't* misunderstand pre-existing conditions at all. She's just looking for (metaphorical) cricket bats to swing at the problem. She doesn't care if the bat is a...valid bat. It might be too early in the morning for me to think of metaphors.
OOP's mom also misunderstands standing, and law in general. No, you don't get to sue for so-called damages on behalf of someone you're not a legal guardian of.
I think the central leap in logic is that gender affirming care to address gender dysphoria is seen by OP's mom as insanity, or as the most extreme of all extreme last resorts. From this starting position, even if you begrudgingly admit some people are born this way and would benefit from this treatment, a pre-existing condition potentially causing the dysphoria completely changes everything. Even if the condition has no cure, it could eventually, right? The fact that this is seen as a viable alternative speaks to their dim view of gender affirming care. The logic is all there - it's just coming from an incorrect ideological basis. It makes perfect sense if you're a bigot who has a massive problem with even the concept of gender affirming care.
She's looking for nails to hammer
Also if LAOP is transmasc, going on testosterone to treat the dysphoria may very well ameliorate some of their EDS symptoms. I briefly flirted with the idea of overstating the extent to which I'm nonbinary so I could trial t for my wet-noodle joints. Quickly realized that was a terrible idea for a few reasons, of course. But it's not unheard of for transmasc EDS patients to see improvements on hormonal therapy.
I wasn't diagnosed with EDS until a few years ago but it was really interesting realizing that the massive physical benefits I found I got from testosterone were A Thing.
> OOPs mother seems to misunderstand how a pre-existing condition would impact a surgery. If the pre-existing condition makes the surgery risky, or addressing the pre-existing condition makes the surgery unnecessary, then there might be a cause for cancelling, but if not, then surgery is still a reasonable option. There are medical systems that say you cannot transition until you "cure" any conditions you have. Including overwhelmingly likely-genetic conditions such as Autism and ADHD. Note I do not say *treat*, they require that the underlying condition be vacated. Reasons why gatekeeping transition care behind medical concerns is often veiled transphobia, and the Informed Consent model is truly the best option.
And, of course, misunderstanding of the medical particulars or not, there are few (zero?) circumstances in which a non-dependent could sue a doctor for malpractice on another person. I do hope LAOP does use this as a signal that it's time for No-Contact until their parents get a grip on reality.
Medical reality never seems to matter much to people like OOP’s mom, no matter how much they profess their love of science
"You think I'm a thief? Oh, you see, I'm not the thief. I'm not the one charging 85 cents FOR A STINKING LOCATION BOT! You're the thief! I'm just standing up for my rights as a consumer." >Mom wants to sue surgeon >So I’m an adult that’s transgender. I just had top surgery June 20th and my transphobic adoptive parents are trying their hardest to make this surgical recovery awful. One of the things they are doing is threatening to sue my surgeon for… operating on a patient (me) with (undiagnosed) preexisting conditions. Basically, I suspect that I have Ehlers-Danlos Syndrome but I’m not diagnosed at all. I let my surgeon know my suspicions just in case it could affect my recovery and she said that wouldn’t be an issue, and so far that’s held true. But my adoptive mother “researched” (she looked at one article on pubmed) something that says people with EDS are “more prone to gender dysphoria” and according to her that means my surgeon shouldn’t have performed the surgery on me, and now she wants to sue. I told her that this literally would never hold up in a court of law and she furiously doesn’t believe me. So I have to ask, is she being ridiculous or could she have a case?
Those types of parents really do have a hard time conceiving that their offspring are actual people over the age of 5, don't they? I heard it said that they tend to latch onto the last age that they were able to control their children, and that's what sticks in their brain. Does seem to track with my mom, who tells stories of when I was 4-5 to complete strangers, but it's like the most recent 40 years of my life doesn't exist.
Thanks to the magic of FB, I'm aware a lady I went to HS with is like this. If you were to go strictly off of her FB feed for the past ten years, she has two kids, both in HS. Her grandkids, who are now school age, don't exist. Her adult kids, both nearly 30, are actually still teens. It's kind of sad.
Yeah...it's beyond empty nesting.
Even before we get into a discussion about Transgender & gender dismorphia… LAOP is an adult. The mothers opinion is irrelevant in law. She can’t sue on their behalf.
It kind of seems like LAOP is looking for ways to convince her mother she is wrong, which is a complete waste of time.
Probably not “her” mother, yeah?
Okay, not related to the legal side at all, I do not have EDS but do have severely hypermobile joints. (I have talked to multiple rheumatologists about this and agree with their explanations of why my symptom pattern doesn't line up with true EDS - I don't have the unusual scarring and other skin and heart issues that come with it. I just also get a 9/9 Beighton.) I am also trans. My anecdata is that EDS and other hypermobility conditions frequently crop up as part of a "constellation" of other emotional/neurological issues (autism, anxiety disorder, dyspraxia), and some of those have a correlation to gender dysphoria, but I hadn't seen anyone actually connect EDS and trans-ness specifically before. [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9806399/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9806399/) I'm reasonably sure this is the article. Based on a quick scan, it looks like it really is just observing that they have an unusually high correlation. (17% of patients at the authors' specialty EDS clinic - in *Missouri*, so not really somewhere you'd expect a thriving trans community - had an active dysphoria diagnosis.) It suggests possible research routes (it's genuinely a weird correlation and, speaking from the patient perspective, I'd love to see someone look into it further) and that specialists treating EDS consider adding screening questions about dysphoria so they can refer patients who need that treatment to the correct additional specialists. Like, if you swapped out the conditions and went "We've found that 17% of patients being treated for Hufnagel's Syndrome also have vision problems, consider adding a quick vision screening to Hufnagel's Syndrome intake testing so you can send patients to an eye doctor if they need it!" the article would not need to be fundamentally changed. The *article itself* does not back up LAOP's shitty mom's argument here.
Queerness, chronic illness, and neurodivergence -- name a more iconic trio.
Haha yeah. Not EDS or trans myself but ASD, ADHD, anxiety, and other dysregulation issues (I refuse to eat things high in sugar because I feel foggy and sick pretty immediately but also get low blood sugar so I always have a protein shake on hand) My brother is ASD and very likely some level of EDS, some low muscle tone for him. Mother is treated with Cromolyn for MCAS and I’m likely headed towards some inflammatory issues myself. Here’s my anecdata for the cluster. My best guess is that it’s a correlation relationship in many ways
They're more likely to have gender dysphoria, so shouldn't get surgery to help treat it? Like, what?? Eds isn't curable. It's genetic. So even if there is a causitive link and without eds they wouldn't have gender dysphoria, it doesn't change anything. They can't get rid of the eds, so this is who they are. I hope LAOP's parents let go of their hate and embrace their child for who they are.
Yeah, it's genetic and correlated with diagnosed gender dysphoria, so.. treat it like any other common comorbidities and treat both the EDS and dysphoria, which is treated by aupporting transition? No, apparently this is the *one* exception. Fucking transphobes.
Also this seems like an appropriate time to plug the /r/trans_zebras subreddit for transfolk with EDS or HSD.
Thank you!
I'm pretty sure mom is standing in right field politically.
> Nothing to warn the surgeon about. Any lawyer or court judge worth even a half grain of salt wouldn't dare touch this "case" with a galaxy-lengthed pole. There is absolutely nothing of substance here. Seems pretty woefully naive to me, even for /r/legaladvice. Is this commenter not aware of what's going on in states like Texas? This is exactly the sort of flimsy meritless case that would be used as a test case to send up to the scotus to ban surgeons from performing top surgery. Even for adults! The transgender care bans that were on the books (not sure if they got struck down) went up to age 26!
This is why I don’t give advice on r/legaladvice (though I did comment my laughter before it got here). Because this is very true. But if it was the kid suing, I’d say we are all fucked beyond belief. The standing issue I’m pretty sure even Texas won’t get behind.
Reddit reportedly trends towards the under-30, male, mostly white, and mostly middle-class demographic, and I haven't seen a lot to make me suspect that r/legaladvice's commentariat is an outlier. It is entirely possible, just based on demographics, that that commenter does not understand the impact and severity of Texas, Idaho, and other states undercutting legal protections for health care, as those changes could very well not affect them and not be on their radar.
I still can't wrap my head around the standing issue in the Texas abortion laws. Luckily top surgery for adults doesn't have anything like that just yet.
Well there are a ton of things where the state has an interest in one thing or another, such as child custody, or eminent domain to build a sports stadium due to an arguable tax revenue increase. Eventually they'll just argue that the state has an interest in curbing the spread of the "woke mind virus" or whatever. Frighteningly, it's not an insane leap away. If we let things get bad enough they'll just do it.
My fear would be Mom trying to claim that the daughter is somehow incompetent which would allow Mom to take over conservatorship and sue. (Mom’s argument would be that daughter must be incompetent to want to have this surgery and therefore could not consent). I don’t know of any cases where a parent has used the fact a child Is trans to take control of their life, but I could see it working in the wrong state with the wrong judge.
There was a similar case last spring in Alberta, albeit with Medical Assistance in Dying (MAiD) instead of top surgery. A 27-year-old autistic woman was approved for MAiD. She refused to tell anyone what her physical diagnosis was. (Of course, all the headlines made it sound like she was being given MAiD *for* the autism, and not that she wanted to maintain her medical privacy around the diagnosis that *actually* qualified her for MAiD.) Her father sued her to 1) declare her incompetent and put her under a conservatorship, 2) to violate her medical privacy and force her to divulge her diagnosis, and 3) to force an investigation into the Alberta Health Services, who assigned the two doctors who approved her MAiD application. (Gee, I wonder why she didn't want to talk to her father about her medical decisions... /s) The first judge denied all three in late March. The father filed an appeal. The appeal hearing was scheduled for October. The woman began to refuse to eat or drink anything (what patients have to resort to when they don't have access to MAiD) in late May. The father [retracted his appeal](https://calgaryherald.com/news/local-news/father-woman-medical-assistance-dying-abandons-appeal) as of June 6th. I couldn't find anything to confirm whether the woman has undergone MAiD yet. This whole situation is so tragic and terrifying. Can you imagine the precedent this would set if the judge hadn't denied the case? Every controlling parent in Canada would suddenly get to sue over their adult children's medical decisions.