TheBigZee
kiwifarms.net
- Joined
- Jan 25, 2021
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:
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.
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.
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.
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 primarily
- 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 with 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.
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.
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...
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.
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.
Last edited:
because my teachers reported that i looked seriously abused.