# Ehlers Danlos. What is it, It's Impact, Who Has It, and Who's Lying



## TheBigZee (Jan 23, 2022)

*Ehlers Danlos*, a guide.

A lot of cows in the beauty parlor claim to have a rare crippling genetic disease that only seems to impact the things they have to do, but not the things they want to do. While it is a real condition, there appears to be a variant that spreads socially, not genetically. Much like rapid onset gender dysphoria, or isolation triggered tics (Beans!). Because it comes up a lot, I'm making a thread for discussing what it is, and what it is not. But first some background.

*Genes, Mutations/Allele, Genotypes, and Phenotypes:*


*Gene - *The concept of a Gene is nebulous. Most simply it's a string of information that causes our cells to do something. How and when it does that thing is complicated (expression). For the purposes of Ehlers Danlos we are talking about Genes that impact Joints, skin, bone, and blood vessels primaril*y*
*Mutation -* is a change in a chromosome. They impact how where and what genes get expressed.
*Allele - *Common mutations in genes/the same spot of a chromosome. What differentiate humans from ants is a collection of common mutations. Blood type is a common example of an allele - Every human has one of six variationsthat give us our blood type. Ehlers Danlos as a syndrome focuses on variations of Collagen (theoretically). This is a building block that glues your body together.
*Genotype *- A collection of alleles as determined by sequencing (see jurrassic park) and tests that are associated wit*h* outward characteristics. It allows definitive testing.
*Phenotype - *A grouping of outward characteristics. Eye and hair color are examples of phenotypes. Medical genetics research often revolves around discovering the genes (geneotype) for the observable traits.
*Ehlers Danlos*
Abbreviated EDS. EDS is a family of syndromes, a collection of medical signs and symptoms that cluster together. The characteristics most commonly associated are loose joints, stretchy skin, developmental delays, and skeletal abnormalities. Its divided into 12+ different types. Some of these types result in severe deformity. Before genetic testing, classifications focused on phenotype - outward signs or clinical features. Things you could see, poke, bend, stretch, or xray. The classical type is called such because it's long been known to doctors - skin that stretches like rubber. This is a side show freak kind of trait, so it drew interest. People looked differently (and lived longer) that the other side show freak phenotype of Marfan syndroe. Marfan leads to an early death due to arterial rupture. There was a lot of interest as to why some people that did not have classical EDS or Marfans had arterial ruptures like these two.  This was described as vascular EDS.

Eventually Medical Research stopped being "Hey, look at this wild shit" and tried to be more scientific. Science also gave doctors tools to be able to determine (if possible) the gene(s) that result in a phenotype. It was found that collagen disorders didn't just cause EDS. They caused Brittle Bone disease, Fragile Cornea Syndrome, TAAD, and more. They also firmly seperated marfans, and allowed distinguishing a class of freaks that did not die of arterial rupture or have stretchy skin which was named hypermobile ehlers danlos.

Three  general types are commonly discussed. hEDS, cEDS, and vEDS. The rest are either very rare, or difficult to separate from these three without very, very expensive types of genetic testing. As a result little is known other than descriptions (hey look at these freaks) that get published as case reports.


classical EDS commonly consists of fragile, stretchy skin, The skin heals in an abnormal way, and it is associated with loose flexible joints, Some people that have cEDS experience arterial rupture (due to col1 mutation, different than the normal colv variants).
vascular EDS is associated with spontaneous ruptures in the vascular system. Sometimes there are facial features, sometimes there is mobility in the small joints. People can begin having aneurysms and dissections as early as their teens. This is a very serious, honest to god disease that needs to be diagnosed as early as possible.
hypermobile EDS is commonly associated with hypermobile joints that dislocate, subluxate, and hyperextend. "Double Jointed". It's often associated with pain.
These are not all of the clinical signs, just the most general. Full List:








						The Types of EDS
					

Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that...




					www.ehlers-danlos.com
				




*The hunt for a cause*
cEDS and vEDS had valid medical reasons for getting to the very bottom of. It's important to know who can die from relatively minor surgery, who will have a stroke if they join an athletic team, etc. They had such specific outward signs that it did not take long at all to discover several alleles associated with the phenotypes. In the case of classical EDS, there are still people that perfectly match the clinical description but do not have any of the associated mutations. One of these became known as classical like EDS, which turned out to be the absence of a glue that holds things together.  There are likely others. cEDS was important to figure out as there is a subtype that causes blood vessels and arteries to rupture.

You may have noticed the hEDS criteria involves loose joints. There is a *very* common condition called generalized laxity or benign hypermobility syndrome (HSD post 2017). It has an uncertain genetic underpinning and some hEDS may be hypermobility syndrome worsened by other alleles. We don't know the genes, there is no definitive test. Prior to 2017 the only feature that separated the two was dislocations and subluxations.

Prior to the internet, no one knew about hEDS other than geneticists. Your joints had to be pretty terrible in childhood to get the attention of a pediatrician. cEDS kids rose to attention due to stitches and trouble with them. vEDS kids, holy fuck.

Post internet people discovered hEDS and a large number of people who definitely had joint hyper mobility (and many who don't) have hEDS.

*Hypermobile EDS *

Because there are no known genes, there is no definitive test. It is mostly a diagnosis of exclusion - anything that will kill you or blind you has been ruled out. If there is uncertainty about a patients clinical presentation (phenotype), they will be classified as "Untyped EDS".  hEDS is diagnosed via a clinical list combined with expert opinion.









						hEDS Diagnostic Checklist - The Ehlers Danlos Society
					

Please click the image below to download the fillable PDF or click here for the printable version. Thanks to Roberto Richheimer, MD, MRCPH for helping to develop the fillable form version.




					www.ehlers-danlos.com
				




A lot of confusion revolves around the Beighton criteria for hypermobility. How to do it correctly, and what it means. It's a test for general joint laxity. Not specific to Hypermobile EDS, but it does serve as a quick screener. Many people self diagnosing with hEDS do not realize you can have a 9/9 and still not have hEDS. You just have hypermobility.

hEDS is genetic so it should cause developmental issues. A childhood history of developmental delays, lisp, occupational therapy, injury, and learning disability support something has been life long. Coordination is usually bad, sports are difficult. However as people age, many things get better. The facial features described in EDS can fade as someone becomes an adult.

*Is EDS a disease?
cEDS/hEDS... not really. *

Some genotypes of cEDS get excluded. Vascular rupture is bad. For most cEDS and all hEDS it's better to think of it as a trait that may predispose someone develop other diseases. Arthritis and other joint diseases, spinal disease, tendonitis, nerve injury, retinal detatchments, cardiovascular issues have all been described. Common age related joint issues tend to happen earlier in people with c/hEDS. They might never happen at all. Someone with c/hEDS might report no subjective pain, or they might say they live in high pain. This might correlate with stuff you can see on an xray or it might not. A new type of EDS, Myopathic EDS was discovered that has a mechanism that can cause widespread muscle pain.

It's clear that for cEDS/hEDS someone's complications heavily dependent on the rest of their genes and their environment. It is not like cystic fibrosis.  People can be sixty  before anyone ever asks them if they've heard of EDS. This is true for everyone - there just isn't such an easily observable external phenotype to group them into. We've found mutations that greatly enhance (but don't cause) the risk of heart disease and breast cancer. One of those genes is so correlated they advise a mastectomy.

*What can someone with EDS do/not do?*
Someone with c/hEDS can do whatever they can tolerate. If someone's joints tolerate it, there is no reason they cannot swim, run, or lift. They may be more prone to injury, they may have to modify their technique. They might also look like total goofs while doing it. Where it gets suspect is being able to do things that count on flexibility and stability like dance or gymnastics. Activities that cause pain/hyperextension/subluxation/dislocation should be avoided.

Most people with EDS are either terribly deformed or live relatively normal lives.

*Can you tell who has EDS just by looking?*
No. The commonly described features are common in that they appear at higher rates than the general public. 50% of people with any type of EDS can touch their nose with their tongue as opposed to 5-10%. People (especially children) have epicanthal folds. The most detailed study of clinical features correlating to specific mutations I've ever found is here:

https://ojrd.biomedcentral.com/articles/10.1186/s13023-020-01470-0

Since vEDS is associated with a jewish heritage (I've known one man who had vEDS and he was jewish), the features/face may well just be a way of saying someone looks abnormally jewish We will not know until sequencing/testing is cheap enough that we can test en-masse or when we start sequencing fetuses GATTACA style.

*The Internet Ruins Everything*
Why the fuck am I making a thread about a class of genetic disorders that you'd previously see in sideshows and medical books? There is a version of hEDS on the internet. Young women get wheelchairs, rollators, and service dogs.

Prior to 2017 the criteria for hEDS was vague. Loose joints. People convinced themselves that every pop was a subluxation. Charlatans, quacks, and chiropractors were diagnosing large numbers of people. If you had hypermobility any problem previously attributed to fibromyalgia or chronic fatigue was now because of hEDS. Genetecists were overwhelmed with (always women) screaming at them that they didn't know what they were talking about, that they knew their bodies and they knew they had hEDS.

Total bedlam. Research slowed to a crawl because there were too many people being included that shouldn't have been. The incidence of hEDS went from 1/2000 to 1/1000 to 1/500. Pediatric genetics clinics refused to see people over 18 unless they had a vascular event.

The internet was flooded with misinformation - don't do PT, don't do surgery, we're special normal medical treatments don't work for us. Our collagen means we need to eat gluten free. Most of it made no sense.

Imagine if a bunch of white women discovered Albinoism for the first time, looked at their skin, and decided that they too must be albino. Imagine they totally displaced actual albinos, and dominated the online conversation and stormed their doctors office claiming being albino caused things utterly unrelated to melanin.

The information on the internet outside of the official society became a cesspool of falsehoods, lies, and half truths. There were a large number of people who wanted the diagnosis so they could tell the world to fuck off, they couldn't do anything to help themselves because they had a rare, dire, genetic disease.

Ultimately researchers came up with a new criteria that was far more exclusive. For two years (always women) were bitching that if they'd gotten to the doctor and misconstrued their joint laxity sooner they could have had the unicorn of fuck off and leave me alone about losing weight and doing PT, just give me opiates diagnosis.

 Anyone says they know what treatment works best for EDS is lying. All medical information doctors need is on the society website. Conservative management of everything is recommended, but *EVERYONE* should start with conservative management outside of emergencies. There simply is not enough research to establish any kind of evidence based guide.

*Internet hEDS*
There is a whole social media phenomenon of young women claiming grave disability. They have hEDS, and claim there are two common comorbidities - MCAS and POTS. They have ports for saline injections, feeding tubes, and discuss entering hospice foe severe pain..

The problem is... feeding tubes, wheelchairs, and ports have never been described prior to the internet. You do not read about it on the EDS society website. I knew one person on formula due to a metabolic disorder, and they thought his hEDS was caused by the lack of a specific nutrient. 

These things are all "syndromes" meaning there is no definitive test. They do play off real, true, common comorbidities like digestive troubles, blood pressure, and heart rate issues. Except none of these things were ever so severe to require such dramatic interventions.

When you research these people, you find that the feeding tubes at least are the result of eating disorders which shifted to "cause my EDS". The POTS should be manageable with diet and exercise, but they insist that's impossible due to hEDS. It's the same general pattern as the fuck off and leave me alone CFS/ME people seeking the diagnosis prior to 2017.

Do they have hEDS? Impossible to definitively tell. Some of them obviously don't. Some exaggerate, some meet the clinical criteria.

Does some undiscovered genotype of hEDS cause this? Possibly. I will say that needing a port, a feeding tube, and a wheelchair results in such a shitty quality of life that you would think doctors and researchers would be very interested in research. But so far, nothing.

What's most likely is that some of them have hEDS, some of them have simple hypermobility, and some have Munchausen's disorder or some combination thereof, My belief is that many of them are prone to the psychological phenomenon that drives rapid onset gender dysphoria, "multiples/systems",  and the development of Tics (Beans!). Whether this is lumpable under munchausen's by internet is up in the air.

There could *actually* be a reason a connective tissue disorder causes this, via causing mental illness. It's impossible to say because we don't have full access to their medial records, just their tik-toks and social media.

*So the mobility aids and braces?*
I believe that if someone is able to get something prescribed and paid for by the medical system they have a demonstrable need for it, even if they misconstrue what that is. Prescription orthotics are expensive, as are custom chairs. If someone needs one, they should be able to tell why exactly they need it.

The number of hEDS people who claim to be "full time" wheelchair users that have poor fitting transport chairs they probably bought second hand is remarkable.

People share tips online how to get cheap, second hand braces and mobiilty aids. Smart crutches are very popular as you can get zebraprint for about $125.


*Who to believe has EDS?*

EDS as a whole probably isn't all that rare. Maybe as common as 1 in 250 when you treat EDS as a singular thing.

In real life? Give people the benefit of the doubt unless you can demonstrate they are being untruthful or exaggerating. Once someone has blown their credibility, fucking go for calling them a liar. There are many people who meet the clinical criteria for hEDS or were found to have cEDS that have no health problems as an adult, and then there are people that have severe hip issues who would need a mobility aid. You really can't tell unless they stretch their skin for you or go over the hEDS checklist. There are people with genetic confirmation of cEDS whose skin does not stretch. It's all very individual.

If someone bought their own smart crutches or chair, at the very least they are greatly exaggerating, possibly due to psychological issues.

If someone was diagnosed after 2017 and they didn't travel across the country I'd generally believe them. A phenomenon I've definitely noticed is medical anxiety/medical OCD. These people do meet the 2017 criteria, but they are also totally neurotic and it causes them to act crazy. See What About Bob where Bob meets Leo for the first time.

Online, most people are larping. I'd guess a ratio of 10 to 1 or higher. Seeing so many threads asking where to get a second hand chair, or going away from where anyone would know them to use their chair for the first time just seems like larping.  The number of teenagers that accuse their parents of ableism is pretty lol. Why can't I just give up, drop out of school, get a wheelchair and a sevice dog mom?

*How do you know this?*
I have a genetic issue. I would have said they were all liars and exaggerators and EDS causes problems you mostly grow out of until I was 35 and got fucking laid low by extensive spinal disease. Apart from the spinal disease, I do have issues but the combo (along with my genetic issue) rapidly become personally identifying. I also did my masters thesis on bioinformatics for absolutely unrelated reasons (supercomputer).

Please feel free to suggest additions or corrections. I will not answer any personal questions.


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## mate (Jan 23, 2022)

Anyone who has Ehlers Danlos disease is being punished for serious misdeeds in a previous life. For example, fighting for the Union in the US Civil War or being a suffragette.


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## TheBigZee (Jan 23, 2022)

mate said:


> Anyone who has Ehlers Danlos disease is being punished for serious misdeeds in a previous life. For example, fighting for the Union in the US Civil War or being a suffragette.


It's not always like that. Maybe you delivered the wrong grade of copper once in Ur.


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## Win98SE (Jan 23, 2022)

I learned about Ehlers–Danlos Syndrome thanks to Eric the Actor, a frequent caller to the Howard Stern Show. I believe he had one of the more severe types.


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## Troonos (Jan 23, 2022)

Can you still get a boner?


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## TheBigZee (Jan 23, 2022)

Win98SE said:


> View attachment 2913566
> I learned about Ehlers–Danlos Syndrome thanks to Eric the Actor, a frequent caller to the Howard Stern Show. I believe he had one of the more severe types.


Yeah. RIP poor guy. He probably had a sizeable deletion that caused several things. You either might look a little goofy or your deformed. Anyone that got their genome sequenced in the aughts was either rich or a really unfortuante human.


Troonos said:


> Can you still get a boner?


You know I said I wouldn't answer personal questions. I will say your dick is a big barometer of your health. If you start going soft during sex in your 30s and you don't know why get your ass to the doctor.


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## Manul Otocolobus (Jan 23, 2022)

> The concept of a Gene is nebulous.


No, it really isn't.



> What differentiate humans from ants is a collection of common mutations.


Not even close



> *Genotype *- A collection of alleles as determined by sequencing (see jurrassic park) and tests that are associated wit*h* outward characteristics. It allows definitive testing.


Genotypes are not necessarily associated with any outward characteristics.



> *Phenotype - *...Medical genetics research often revolves around discovering the genes (geneotype) for the observable traits.


This is not accurate.



> Eventually Medical Research stopped being "Hey, look at this wild shit" and tried to be more scientific.


Just... no. Once the science and technology of genetic analysis became more accessible, it was applied to known medical conditions. As it continued to increase in accessibility, it is now possible to use it for individual diagnosis and characterization.



> The rest are either very rare, or difficult to separate from these three without very, very expensive types of genetic testing.


It isn't that expensive, and is often covered by both private and public medical insurance if it has the potential to provide any probative medical value.



> Prior to the internet, no one knew about hEDS other than geneticists.


Incorrect. It was a well known syndrome taught to all physicians.



> hEDS is genetic so it should cause developmental issues


This is not true. Presentation is variable.



> *Is EDS a disease? cEDS/hEDS... not really.*


Couldn't be more wrong.

One thing not mentioned is that in people that have hEDS, it is not uncommon to see a familial pattern that was typically unrecognized because very few people in medicine bother to do a proper family history on their patients.


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## TheBigZee (Jan 23, 2022)

Manul Otocolobus said:


> No, it really isn't.


Define gene. It's a lot more complicated that what is taught in high school.


Manul Otocolobus said:


> Not even close


It's a simplification.


Manul Otocolobus said:


> Genotypes are not necessarily associated with any outward characteristics.


Duh.


Manul Otocolobus said:


> This is not accurate.


Observable has a pretty broad definition. Please let me know how to make it better. Heart disease is observable, as is type 2 diabetes.


Manul Otocolobus said:


> Just... no. Once the science and technology of genetic analysis became more accessible, it was applied to known medical conditions. As it continued to increase in accessibility, it is now possible to use it for individual diagnosis and characterization.


Go read medical research from the 1800s and early 1900s. That's what I'm talking about.


Manul Otocolobus said:


> It isn't that expensive, and is often covered by both private and public medical insurance if it has the potential to provide any probative medical value.


"Connective tissue panels" that are covered by insurance often only test for vascular connective tissue, Stuff like COL1 cEDS, vEDS, Osteogenisis Imperfecta, marfan and TAAD. . The second most common Panel includes colv cEDS. COLV cEDS, and the genes that have been associated with the rarer variants (myopathic eds, clEDS) You wind up paying $1200-$2000 per gene once you get outside of the Invitae panel. They still (as of 2018 ) pay to rule out things that will cripple, kill or blind you



Manul Otocolobus said:


> Incorrect. It was a well known syndrome taught to all physicians.


No. EDS as a group was. What was stressed as most important and all physicians knew was the risk of vascular events or grave disabilty with connective tissue disorders. Subtyping EDS and the specific features of each was the realm of geneticists and genetic councilors.


Manul Otocolobus said:


> I'll edit my post as I continue to read through the OP. So far, I'm not impressed.


I think you're right about my gross simplifications, and so far you've been wrong on two important details.




> One thing not mentioned is that in people that have hEDS, it is not uncommon to see a familial pattern that was typically unrecognized because very few people in medicine bother to do a proper family history on their patients.


Read the checklist from the society. Family history is a minor criteria. So many people lie about family history that it's generally recommended in the US to take the diagnosed first order relative with you.



> Couldn't be more wrong.



Please elucidate.


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## ShadowCass (May 10, 2022)

Mayo Jax (they have an EDS clinic) does try and get the first degree relative to come in - even if they are 80 YO with cancer.  They really do push hard for the relative to come in. (Of course, the relatives is gonna have to pay for the entire process as well).  

I think this is an interesting thread, there’s so much misinformation out there.



TheBigZee said:


> Read the checklist from the society. Family history is a minor criteria. So many people lie about family history that it's generally recommended in the US to take the diagnosed first order relative with you.


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## Larry David's Crypto Fund (May 18, 2022)

I feel bad for people who actually have this disorder because it has been so completely taken over by women with personality disorders, anyone with savvy and sense immediately goes "lol yeah right" internally the second they hear "hEDS."


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## TheBigZee (May 27, 2022)

ShadowCass said:


> Mayo Jax (they have an EDS clinic) does try and get the first degree relative to come in - even if they are 80 YO with cancer.  They really do push hard for the relative to come in. (Of course, the relatives is gonna have to pay for the entire process as well).
> 
> I think this is an interesting thread, there’s so much misinformation out there.



They want to make sure whoever they enroll in research meets the full criteria, and get as many people enrolled as possible. The 2017 criteria rewrite was really about dissuading people from fucking up the research. 



Larry David's Opera Cape said:


> I feel bad for people who actually have this disorder because it has been so completely taken over by women with personality disorders, anyone with savvy and sense immediately goes "lol yeah right" internally the second they hear "hEDS."



The crazy thing is that it can cause a lot of stress in childhood, which lends people to developing mental illness and personality disorders. Until you can split hEDS into diseases with objective tests, there's no way to know if having some causes of hEDS doesn't lead to mental illness due to brain sag during development or some shit. Elyn Saks who wrote "The center cannot hold" has schizophrenia, and she describes someone scaring the shit out of her by suggesting she had marfan's due to build, skin stretch, and flexibility. 

It's also made me really sympathetic to trans people. It's a similar thing. Disorder with vague criteria that got overrun with nut-jobs because they got asspatts. I'm hoping the WPATH guidelines update helps the pitiable super gay/les trans "I'm a boy/girl" people by running a lot of fuckers out.


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## A tree (May 28, 2022)

All the hEDS nonsense online has already had an effect on people seeking a diagnosis. I know two young women who likely do have it, but becusee they're young, female, autistic, diagnosed with anxiety disorders they can't even get a referral. The rheumatologists don't want to know. In my experience it's often once a woman has kids and her body just goes to shit on her causing actual disability rather than just being injury prone, only then will they take it seriously. 

I just advise the younguns to start their phyiso regime now and don't wait to be told.


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## PittyKitty (May 29, 2022)

I have been diagnosed with EDS type 3 (hypermobility). Generally terribly lose joints, also can bend them into angles that make people sick, bruising af even with light touch, terrible pain in random joints, tiredness, problem with heart valve, very delicate skin and specific scarring type. 


Have been diagnosed purely based on physical evidence, not genetic testing so idk how valid it is. 

Im not part of any online group or anything like that. When in pain just poping painkillers and go on with my life. 
Feel free to ask more if you are interested.


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## TheBigZee (May 29, 2022)

PittyKitty said:


> I have been diagnosed with EDS type 3 (hypermobility). Generally terribly lose joints, also can bend them into angles that make people sick, bruising af even with light touch, terrible pain in random joints, tiredness, problem with heart valve, very delicate skin and specific scarring type.
> 
> 
> Have been diagnosed purely based on physical evidence, not genetic testing so idk how valid it is.
> ...



If you were diagnosed by a doctor and other doctors agree, that's as valid as it gets. 

Do you remember having any problems in childhood? Widespread pain? Headaches? Learning disabilities? Awkwardness?

edit: do you have any mental health diagnosis? Do you think they are related to your current pain, childhood experiences, or are they something other people in your family dealt with?


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## PittyKitty (May 29, 2022)

TheBigZee said:


> If you were diagnosed by a doctor and other doctors agree, that's as valid as it gets.
> 
> Do you remember having any problems in childhood? Widespread pain? Headaches? Learning disabilities? Awkwardness?
> 
> edit: do you have any mental health diagnosis? Do you think they are related to your current pain, childhood experiences, or are they something other people in your family dealt with?


I am the only child so i think awkwardness might be related to this. I usually spent time alone reading books or playing vidya or just play pretend with my toys. Anything that didn't required much of human contact, still dont really know how to interact with people other than on a professional level.

I am very clumsy, always been, absolutely unable to do precise, manual stuff, even handwriting is so bad i cant really sometimes understand what have i written. However, i wouldn't say i had any development/learning issues, beside inability to pronaunce the letter "r" (in my language we go with hard r)

Childhood: i come from a very disfunctional family so idk how much of mental health issues are related to those but been on antipsychotic, benzos, antidepressants since the age of 15.

I always had some sort of pains, spent insane amount of time in hospitals as a child looking for reasons why am i in constant pain and bruised (social services were involved at some point). I still remember that one of the doc said i shpuld just eat more jelly and stop complaining about joint issues. I have migraines so bad it deformed one of my eye nerve, which resulted in even more headaches.

Edit : forgot to mention but i am healing so badly, that at some point one of the doctor said he only seen 80+ healing in the same speed as i do, after having a small surgery. No need to memtion i was 28 back then.


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## TheBigZee (May 29, 2022)

PittyKitty said:


> I am the only child so i think awkwardness might be related to this. I usually spent time alone reading books or playing vidya or just play pretend with my toys. Anything that didn't required much of human contact, still dont really know how to interact with people other than on a professional level.
> 
> I am very clumsy, always been, absolutely unable to do precise, manual stuff, even handwriting is so bad i cant really sometimes understand what have i written. However, i wouldn't say i had any development/learning issues, beside inability to pronaunce the letter "r" (in my language we go with hard r)
> 
> ...




It's interesting - I had many of the childhood experiences you did, and have a terrible mental health issue. From the time I was born my mom and dad knew something was wrong. I got stitches so often my parents bought me a nintendo and encouraged me to sit around because they were terrified the hospital would think they were deliberately cutting me. 

Do you remember any key points you were rejected by your peers as a young child? Specifically because of visual processing issues or physical awkwardness. Did you need glasses early?

I don't know if you get/need stitches often. My doctor taught me how to test my own closure and remove my own stitches. Otherwise I'd have to come in once a week to see if the stitches could come out yet. Worth learning if you get stitches frequently.


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## PittyKitty (May 30, 2022)

TheBigZee said:


> It's interesting - I had many of the childhood experiences you did, and have a terrible mental health issue. From the time I was born my mom and dad knew something was wrong. I got stitches so often my parents bought me a nintendo and encouraged me to sit around because they were terrified the hospital would think they were deliberately cutting me.
> 
> Do you remember any key points you were rejected by your peers as a young child? Specifically because of visual processing issues or physical awkwardness. Did you need glasses early?
> 
> I don't know if you get/need stitches often. My doctor taught me how to test my own closure and remove my own stitches. Otherwise I'd have to come in once a week to see if the stitches could come out yet. Worth learning if you get stitches frequently.


I never need much stitching, but when i did my body keep rejecting them and it was turning into a bloody mess of puss and pain. Just nothing artificial in my skin, no earrings otherwise instant infection.
As i said, i have been so bruised  that social services questioned my parents about beating me  because my teachers reported that i looked seriously abused.
I have an astigmatism and - 4 on both eyes, needed glasses when around 5.

My mother told me kids started rejecting me in a preschool, no one wanted to play with me because somehow i was oblivious to the "rules" (i am a female, and i always been rather blunt and not understanding female social group hierarchy at the beginning, at the end i just simply didn't give a flying fuck about pretty girls pecking order). Physically you can see i have features of eds like extremely thin upper lip for example or lobless ears). I think you can sense something is odd but not necessarily "deformed" or ugly (coping hard, seething, dilating ) just diferent.

If it( child loneliness) was connected to clumsyness and eds i dont know. I know it still pissess me off when i try to do something nice and i feel like my body is not doing what i want. Sort of imagine calligraphy but wearing welding gloves. It makes me feel like a total retard when i try to cut onion thinly and i get chunks like just used a fucking hammer not a thin knife. But what do?

Personally i never really connected those mental or social problems to anything else than being "weird", never even heard about the connection before.

At the end of the day i didn't really give my diagnosis much of a thought, beside going to a doctor (one or another) often because there's something going wrong all the time either heart issues, dental problems, eye problems, hair falling, another pain prescription, dislocated join etc eyc. Kinda become  a part of my life in the same way there is Sunday at the end of every week.

Never really heard about EDS before anywhere, until as mentioned i been hearing about it everywhere. I was a bit surprised, as i usually needed to tell a new doctor what it is with some joint bending example, now they almost all seem to know about it.

Didn't know it became a new shtick ilness to collect 
I dont even understand why does it become fashionable?


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## TheBigZee (May 30, 2022)

PittyKitty said:


> Personally i never really connected those mental or social problems to anything else than being "weird", never even heard about the connection before.



There is no separating any part of the whole. It's possible you had a cognitive developmental delay compared to your peers.  You could have had trouble reading their social cues, or responding appropriately with your body language and facial expressions. 
Peer rejection (bullying) in early childhood elevates risk of psychotic disorders in adulthood.  Childhood illness as well.


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## PittyKitty (May 30, 2022)

So im curious now, is there any lolcow claiming eds for Internet points? Anything obviously faked? I would be really interested in seeing why and how someone would think its "glamor" disease to have?


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## TheBigZee (May 30, 2022)

PittyKitty said:


> So im curious now, is there any lolcow claiming eds for Internet points? Anything obviously faked? I would be really interested in seeing why and how someone would think its "glamor" disease to have?



Almost all of the chronic illness lolcows at one point or another. This thread started from reading people debate dumb shit about EDS in the muchausen's by internet thread.


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## PittyKitty (May 30, 2022)

TheBigZee said:


> Almost all of the chronic illness lolcows at one point or another. This thread started from reading people debate dumb shit about EDS in the muchausen's by internet thread.


So i understand you are diagnosed with it too. Can i ask which one? It seems already this thread is more like a discussion between 2 of us, might as well tmi (we can go into private conversation if you want). I never met anyone else with it, or anyone who d know about it irl (but as antisocial as i am its not surprising). 

How was your childhood? Any mental issues? Any (more) problems right now as you get older?


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## autoerotic bus accident (May 30, 2022)

It's absolutely real, and it seems like whatever that causes the mutations may be on the rise rather than just diagnostic awareness. But it is definitely something a lot of internet munchies gravitate towards, probably due to the variance in symptoms and lack of testing. It is easy to pretend since the apparently most common type doesn't have the faulty gene or genes identified yet, and because one of the symptoms is "double jointedness" which is something MANY young women experience as a normal body feature because female hormones increase joint laxity (without actually having EDS or any negative symptoms). This population is  coincidentally the most likely to fake diseases for attention, so it's no wonder EDS cosplay became popular in this demographic. I have hope this brand of fakery may die down once the gene is identified, and there are many trials right now.

EDS is really prevalent in families in some areas and clinical practices, and people with it really tend to have some commonalities in their appearances even beyond the hypermobility (tall, marfanoid, flat feet, etc) so the high number of fakers with zero of these characteristics and zero family history tend to be fairly obvious.


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## TheBigZee (May 31, 2022)

PittyKitty said:


> So i understand you are diagnosed with it too. Can i ask which one? It seems already this thread is more like a discussion between 2 of us, might as well tmi (we can go into private conversation if you want). I never met anyone else with it, or anyone who d know about it irl (but as antisocial as i am its not surprising).
> 
> How was your childhood? Any mental issues? Any (more) problems right now as you get older?



I can't talk about the CTD and MI directly, and I can't give a lot of details - even if we go private the site could get hacked, or the whole DB could wind up in court records. You can very easily deanonymize me in the CMS data-sets. Medicare makes it's claims info public, but they try to scramble things to make them harder to connect up.

Childhood I was floppy at birth, I couldn't move my eyes together correctly.  My mom said the pediatrician said he didn't know what was wrong with me, but thought I'd grow out of it. I made motor milestones late (sitting, crawling, walking). I had a lisp. I developed galloping myopia. I got tons of stitches, and you can still see the scars over my body - they grew with me. I had extreme difficulty learning how to write properly, and I had a learning disability related to math and visual processing. My esophegus is biderectional (burping brings stuff up), I've always had dysphagia (need water to swallow dry, hard foods). I had severe headaches (common), and I remember getting CT-scans and seeing a ton of doctors. When I was five my broke as fuck parents got me a nintendo and took me to the library as much as I wanted so I'd be sedentary and not get stitches. They were worried about what happened to your parents with social services.

Socially I was bullied and excluded for several reasons. I think firstly my dad had aspergers and I did not learn proper socialization from him. I was awkward on the playground, chosen last, etc. I had the visual processing difficulty and I don't think I picked up I was pissing off/annoying the other kids. My parents were hs grads with thick country accents and the district put me in a talented and gifted program (despite knowing I had a learning disability for math) with a bunch of kids whose parents were college educated middle and upper middle class. I sat in the corner and read.

Wound up with major self esteem issues.

Mental health wise I take 300-800mg seroquel depending on how I'm doing, lamictal, and prozac, which tells you more than the diagnosis.

Adult health wise - I've got svt, get bouts of hypertensive urgency (unknown why). I've got an issue focusing one eye (dunno why). The eds was minimal until I had debilitating pain, followed by widespread neurological problems (parathesia, clumsiness). The details of the spinal disease would de-anonymize me. Many, many levels with either moderate-severe neuroforminal stenosis or moderate central canal stenosis, or both. I'm in the middle of  a series of decompressions (some with fusions). Before they started I couldn't take care of myself, and now even though the pain is disabling sometimes I can at least keep my place clean. I'm about to do the last major surgery this summer (s1-l4 fusion), and then I'm probably going to need a pain pump or spinal stimulator to keep from having long bouts of disabling pain. After this it's all laminectomies or micro-discectomies if I elect to do them.

edit: I'm between 35 and 42 years in age.


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## PittyKitty (Jun 1, 2022)

TheBigZee said:


> I can't talk about the CTD and MI directly, and I can't give a lot of details - even if we go private the site could get hacked, or the whole DB could wind up in court records. You can very easily deanonymize me in the CMS data-sets. Medicare makes it's claims info public, but they try to scramble things to make them harder to connect up.
> 
> Childhood I was floppy at birth, I couldn't move my eyes together correctly.  My mom said the pediatrician said he didn't know what was wrong with me, but thought I'd grow out of it. I made motor milestones late (sitting, crawling, walking). I had a lisp. I developed galloping myopia. I got tons of stitches, and you can still see the scars over my body - they grew with me. I had extreme difficulty learning how to write properly, and I had a learning disability related to math and visual processing. My esophegus is biderectional (burping brings stuff up), I've always had dysphagia (need water to swallow dry, hard foods). I had severe headaches (common), and I remember getting CT-scans and seeing a ton of doctors. When I was five my broke as fuck parents got me a nintendo and took me to the library as much as I wanted so I'd be sedentary and not get stitches. They were worried about what happened to your parents with social services.
> 
> ...


Oh my god. I'm so sorry to hear this. Yours seems like much much worse than mine ever been. Mine is mostly a miriad of "small" things that i try to fix before they go into total shit. 

I have always been having weak teeth (like everything else) , so dentist almost every  3 months (during covid privately because ofc they were only afraid of virus when working on our NHS) and yet few days ago one of my tooth just broke (without any reason, not that i have bitten anything) and split into halves right up to the roof. Now i need a surgery to remove broken root out of my jaw bone. Isn't this lovely? So its shit like that happening now and than and i try to fix it in a vain effort to keep health fairly ok before it goes to full shit. 

But comparing to you i see i have it much better. I hope yoir surgery goes well. You don't need to answer this question, but how do you see your life span? Im around 35-40 and i see how soon those minor problems can very fast turn into major problems. I don't really see myself past 50-55+ (at least no worries about retirement plan). I think that will probably be my heart that gives up (irregular beats, pauses, valve doesn't close up properly, weak blood flow-always blue hands and feet as if blood didn't really move fast enough to keep it warm). 

Also despite having NHS anything needs to be done privately here as queues are insane, so a huge chunk of my paycheck goes into healthcare and medications. Do you at least have good healthcare where ever you live?


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## TheBigZee (Jun 1, 2022)

PittyKitty said:


> Oh my god. I'm so sorry to hear this. Yours seems like much much worse than mine ever been. Mine is mostly a miriad of "small" things that i try to fix before they go into total shit.
> 
> I have always been having weak teeth (like everything else) , so dentist almost every  3 months (during covid privately because ofc they were only afraid of virus when working on our NHS) and yet few days ago one of my tooth just broke (without any reason, not that i have bitten anything) and split into halves right up to the roof. Now i need a surgery to remove broken root out of my jaw bone. Isn't this lovely? So its shit like that happening now and than and i try to fix it in a vain effort to keep health fairly ok before it goes to full shit.
> 
> ...



I don't think anything I have will substantially shorten my life, so I'll peg it at 70+ unless something unrelated comes up. 

I have medicare so I can get the healthcare I need. It's a public insurance program for people over 65, or with disabilities. The hospitals write off my portion of the bills under a program called disproportionate share.


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## Otterly (Jun 3, 2022)

EDS is real, yes. There are several ‘versions’ of it and some can be very severe. There are genetic tests available for the more severe forms. The issue is that there is this whole range of forms and some are extremely serious and life limiting, while some are much less serious.
   Now onto our munchies who claim EDS while having none of the severe symptom markers (v flexible skin, deformity, vascular issues etc.) most are latching into a diagnosis that can’t be disproven because there aren’t really tests that are definitive for the milder forms. Complicating that is the fact that womens connective tissue is more variable in strength/integrity than men (no I don’t have a source, this is what conversations with rheumatologist consults have shown me.) the rheumatologist I know thinks that women also have a hormonal component to such variability, as she sees women who have experienced a lot of joint laxity during pregnancy and either never recovered or only partially recovered.
   Anyway. EDS is real, the severe forms are awful, and the less severe forms are annoying and not ‘disprovable’ which is why munchies love it.
ETA: munchie comments not directed at posters above. EDs is real, I’m talking about the perfectly alright girls in the munchies threads with the fullly deck out wheelchairs who magically recover for fun events


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## behindyourightnow (Jun 3, 2022)

People on this forum don’t know much about hEDS and some of them don’t want to admit that it’s real because then they would have to mentally face the fact that they were making fun of some “munchie” lolcows who did not deserve it, aka they were wrong _and_ being shitty. 

hEDS is sometimes so obvious that you can tell if someone has it at a glance (note: by “you” I mean a random observer, not a doctor giving an actual diagnosis, who should obviously look deeper). 

There’s just… a look. Uneven skin tone/blotchiness, excessive skin wrinkling around the joints, types of visible scars, often a doughy look to the skin overall. All that before you even get to the joint hyperextension and general body type.

 “Kindness” in the lolcows forum is a good example of the skin appearance I am talking about:




But there were still a bunch of people in the sideshows thread calling her a munchie. She’s a genuine lolcow who has BPD, but the hEDS is real.


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## TheBigZee (Jun 4, 2022)

behindyourightnow said:


> People on this forum don’t know much about hEDS and some of them don’t want to admit that it’s real because then they would have to mentally face the fact that they were making fun of some “munchie” lolcows who did not deserve it, aka they were wrong _and_ being shitty.
> 
> hEDS is sometimes so obvious that you can tell if someone has it at a glance (note: by “you” I mean a random observer, not a doctor giving an actual diagnosis, who should obviously look deeper).
> 
> ...



She could have hEDS for real, but still "use" it in a toxic way because of her BPD. I've seen some of that in real life - young women who have hEDS but also badly need a therapist and psychiatrist.


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## Grey B. Train (Jul 14, 2022)

I've been burned on KF before, so I don't want to go into details.  But I'm supremely loving that a lot of these collagen mutations are finally getting reviewed and studied.  I wish munchies didn't cloud the water and screw things up for others.   Also, as of 2019 at least, (private US) insurance will cover the invitae test if there are enough concerning criteria (even without beighton) like a aneurysm rupture before age 40.


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## grimacefetishist (Jul 14, 2022)

Women think they have it because they end up with unstable joints, but the doctors they see are legally unable to easily say "that's just a woman problem." 

Truth of the matter is that it is, but it can come across so horribly wrong to the patient that it just can't be brought up at all.


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