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Chronic pain

Have you heard of Ehlers Danlos Syndrome? Troubling YouTube channels

124 replies

Ayearofmad · 27/08/2021 07:59

I have this condition and it’s really painful and causes a lot of different and unpleasant problems. Looking at YouTube channels by people with it is really disturbing. Most seem to be teens and young adult women. Most are in the US and nearly all of them have supportive braces on every limb and elaborate metal splints on every finger. A fair amount have feeding tubes and some stomas. Many are in wheelchairs, carry loads of medical kit round with them and use all sorts of aids. Lots seem to be in hospital on a regular basis having major operations and have just about every known manifestation of the syndrome.

I know it affects everyone differently and there are lots of different types of it but in real Life I don’t know anyone with it who has the sheer amount of medical intervention as the people on YouTube channels have. As I am getting older it’s noticeable more painful - degenerative changes throughout spine/hips, difficulty regulating body temperature, teeth coming loose, more dislocations, severe constipation and hiatus hernia etc but no one in rheumatology, physio, OT, orthopaedics or gastroenterology have ever encouraged wearing cervical collars, braces, ring splints, having every troublesome joint pinned . I do have a lot of painkillers and wear supports when I have particular problems with injury or tendonitis etc but not all the time. And I may need an operation to fuse one joint that is dislocating regularly but I’m older and so that’s not entirely surprising.

There seem to be so many YouTube’s making EDS into a glamorised, hyper medicalised condition. I’m in my 60s and haven’t come across anyone with EDS in real life like these girls/women. I think it’s so weird and would be so scary for anyone who has had a recent diagnosis to watch their videos . It’s like their whole identity is having the worst possible case of it as possible. I’m not saying any condition should be trivialised but my god these women seem to be relishing every intervention. It’s a bit like sites that encourage people with eating disorders to become even more ill. Is there anything that can be done ie reporting YouTube videos?

OP posts:

Stevie6 · 27/08/2021 08:04

Go to the chronic pain board, there's plenty who suffer with it over there. It's not always as extreme as what you're seeing, but the condition isn't that uncommon


SmidgenofaPigeon · 27/08/2021 08:06

That’s quite a big American trend, there’s a good Reddit group I follow called IllnessFakers. It’s quite fascinating.

There was quite a famous illness blogger called Jackie who actually died a couple of years ago as a result of unnecessary procedures. She had scores of followers and post to YouTube every single day about her feeding tube, braces etc.


orangejuicer · 27/08/2021 08:08

I've heard of this - a contestant on RuPaul'd drag race a few years ago has it and he is very successful, no feeding tube or braces etc.


Stevie6 · 27/08/2021 08:08

Sorry half posted, I think it's the same with a lot of conditions, only the extremes get posted about on places like YouTube. I'm not sure there's much can be done though. It's the reason Googling your conditions is the worst possible idea, even though you're looking for support and advice


SmidgenofaPigeon · 27/08/2021 08:08

Most worrying of all are the medical professionals’ that allow the procedures and profit from these young girls/women, although I understand ‘doctor shopping’ is a big thing amongst this culture.


Ayearofmad · 27/08/2021 08:24

I didn’t know there was a chronic pain board on here. I’d be interested to hear what people with it feel about these videos and if they know of anyone who has massive amounts of serious intervention. I know a lot of people with it from the hospital I go to and family with it but literally no one has braces on every limb and finger. I’ve known one person need a feeding tube for a while but they have other conditions too and no one who uses a wheelchair all the time. Theres just something a bit off about how these YouTubers. I’ll take a look on Reddit smidgeonofapidgeon. And I agree who the hell are The doctors and surgeons doing all these big ops on them. I’ve been told surgery must be a last resort due to the high incidence of Problems with healing, procedures not working or causing additional problems. I am considering an op but only one one joint that with age is dislocating far more. The hospital are only considering it after 40 years of problems with it though.

OP posts:

Ayearofmad · 27/08/2021 08:28

I’ve asked if this could be moved to the chronic illness board as I wasn’t aware there was one when I posted.

OP posts:

catfunk · 27/08/2021 08:30

Agree it all sounds very Performative but I've not seen jt. I tend to stay away from sickness influencers though, Instagram is rife with it too.

Weirdly I'm one of 3 in my workplace of 50 people who have it. I live the most 'normal' life out of the 3 of us (HEDS) but I've never seen anyone with feeding tubes/ splints.
One of my colleagues uses a walking stick permanently now and the other is in and out of hospital with heart issues (CEDS)


tickledtiger · 27/08/2021 08:31

I don’t have EDS but it runs in my family. One of my relatives was diagnosed as an adolescent and she was warned she might need surgery or have to use a wheelchair in the future, that really upset her. I don’t know if she has seen any of those YouTubers.


Sonarl · 27/08/2021 08:33

My son has EDS. He has is pretty mild, but it does affect him. He is very tall and thin and suffers digestive issues as a result of it. He used to have physio issues as a young child (toe walking, holding a pencil etc) but this hardly bothers him now as a teen. He is very active and plays a lot of sport, where his height and "bediness" are and advantage I think (he can do a weird feinting thing in Rugby where he bends his knees in and can move the top of his body very far laterally to avoid being tackled). I've seen Andy Murray do a similar thing and think he has EDS as well probably.

Unfortunately EDS, like ME, has become a hypochondriac and muchassen by proxy favourite, particularly in the US, as the symptoms can be nebulous and it's hard to disprove. As pp said there's lots about it on Reddit and the farm. I feel sorry for people that fake or over egg physical genetic conditions like EDS, they are not well.


atleastitswarm · 27/08/2021 08:34

My neighbour’s son has it. He does not suffer in any of the ways you’ve said, he is currently at uni and seems to be doing very well


NoYOUbekind · 27/08/2021 08:39

I don't think you can underestimate the medicalisation of American culture. That and influencer culture. But essentially if your doctor is paid for every visit, every input, every operation, every drug... it's big pharma, basically.

(And I usually eyeroll when big pharma is blamed for anything, but I think in this situation, there's a case to answer.)


Ayearofmad · 27/08/2021 08:39

tickledtiger. I hope your relative haven’t seen this stuff because if I were young it would scare the living daylights out of me thinking that this was lay in store for me. Yes it’s important to get heart checks and make sure you don’t have The type that causes embolisms, perforating organs and other horrible stuff. I can imagine needing a walking stick catfunk and I’ve needed crutches when I’ve torn ligaments in my leg along with a walking boot but know no one who wears a whole suit of armour of braces while sat in a wheelchair. You’d end up with muscle atrophy surely.

OP posts:

RainbowZebraWarrior · 27/08/2021 08:44

I have EDS and do struggle with it. Yes obviously, there are those on the really sever end of the scale who are wheelchair bound and have feeding tubes etc. I tend to stick to EDS Support UK and the Ehlers Danlos Society for support and info. I know there are some oddball on social media who as somwones just referred to are really medical influencers. I guess it's part of modern day society that we get the freak show element of all sorts of things. It's particularly sad if some of these people are truly faking and exaggerating. Like a PP said, perhaps it lends itself to Munchausens.

Someone from my support network who is trying to get a rightful diagnosis was told by a medical professional recently that she was 'just after the label' As apparently it seems EDS is a 'fashionable' diagnosis at the moment. That's all quite scary, and why the medical profession need more awareness of it. Many people are misdiagnosed. Some can't get the right diagnosis, some wrongly and too easily it seems.


romdowa · 27/08/2021 08:45

I have eds and I know people personally with it (very small community in my country) who have had surgeries, feeding tubes, stomas and who are wheelchair bound. Eds is a spectrum disorder and everyone is different. So I suppose someone has to be on the milder side of it. Usually though only those severe cases put themselves out there , in my country its usually to fund treatment


Caramellatteplease · 27/08/2021 08:46

I have some experience of this within my family one with diagnosed ethos danlos, two with Hypermobility.

DS uses a wheelchair as a result of his other difficulties. So doesn't need other supports

Both the other two use a variety of supports depending on what they are doing if they are presently injured. Finger splints are really very common for writing. DD was nhs inpatient joint rehabilitation due to the frequency and nature of dislocations if that hadnt worked or we hadnt made it to the right team in time surgery might well have been necessary. She has supports for shoulder, both knees and both ankles she I'd advised to wear, but she doesn't particularly like them so wears kinesiology tape generally if shes exercising or walking distances. Local physios are crap and advise against supports, specialists advise using supports so many people dont get the right advice

Both (young teenage girls) have had extensive involvement of physio and OT. One has cardiology involvement due to related difficulties, dd is on waiting list.


Ayearofmad · 27/08/2021 08:48

sonarl im glad your son is doing ok and playing the sports he enjoys. I didn’t think people would actually fake it and just thought looking on YouTube that either the US has a very different approach to managing EDS than the UK or that these women were attention seeking and exaggerating their problems. If they’re faking they’re definitely ill but not in the way they are portraying. NoYOUbekind. That makes sense if people are making money off their channels and the medics are making money off these women. It’s very symbiotic. And totally unethical.

OP posts:

Gilead · 27/08/2021 08:51

I have EDS. I have a stoma due to gastro problems with it. I use a mobility scooter outside, stick inside. Am waiting for double hip replacement. Also use Wrist supports.
Dd is 25. She has a bladder prolapse due to Eds and will be going to hospital next week. They will also be checking her bowel as she has constant diarrhoea. She has various supports and in all likelihood will be in a wheelchair in the next five years or so.


Ayearofmad · 27/08/2021 08:56

Rainbow. I was misdiagnosed for years. It was only when one of my DC was diagnosed that I was tested and found to have it. It was a relief to finally not feel like a hypochondriac and know why I had so many seemingly unrelated issues. Caramellate at the hospital I go to they only recommend braces for short/acute periods. I just use my judgement and know when I feel they’ll help. There do seem to be a lot of conflicting opinions about management.

OP posts:

Ayearofmad · 27/08/2021 08:59

Giliead I’m so sorry you and your DD as so severely affected. I really hope both of your upcoming surgeries are successful and helpful.

OP posts:

ItsNotMeAnymore · 27/08/2021 09:06

It sounds a horrible condition to have.


InDispairThisWeek · 27/08/2021 09:15

I’m trying to get dd diagnosed with EDS, she is hyper mobile, has (diagnosed) CFS, has stretch marks, very painful periods, anxiety and POTs, she’s in constant pain yet the doctor won’t send her to a rheumatologist, I’m pretty sure they think it’s all down to her mental health or she is making things up (or I am), I’m currently looking at going private.


Fruitinator · 27/08/2021 09:18

Yes I have heard of it OP, and I hope you are getting good support & treatment. Flowers

A close family member had vascular EDS, she passed away in 2017, in her early 30's.

I wouldn't wish EDS on anyone, it isn't just about hyper mobility or stretchy skin, which is what it seems these YouTube channels are portraying.

I do think there are differing approaches to treatment between the UK & US. My relative was told with their type it would be the most minimal possible, as any treatment could cause bigger problems.


Jux · 27/08/2021 09:22

I know several people with this, and they don't even get pain meds!

I think the over-medicalisation in the US is due to it being private health care. If you can pay - or your insurance will pay - then it'll happen. The NHS doesn't work like that!

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