Have you heard of Ehlers Danlos Syndrome? Troubling YouTube channels

[Ayearofmad]

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?

My son’s ex does. So does her mother. My son was accepting of the fact that he would be her full time carer in later life.

I have hEDS and I don’t need a lot of the stuff they have. It affects everyone differently. I know of one person in real life who is in a wheelchair and catheterised due to EDS but the other few people I know are more like me.

It’s great to see more awareness of it but I think it can be overmedicalised in the USA.

Everyone is different but some decent physio to help strengthen the right places has made the biggest difference to me.

A friend of mine has it and it does affect her but has none of the interventions other than occasionally a neck brace.

indespair. It’s awful to have to fight for a referral. If your DD does have EDS then an earlier diagnosis would help her project her joints and manage her other problems. I think most of my problems are from not getting diagnosed till I was in my 50s. There’s no cure but I think so much can be done to make living with it better and end up with less damage in later life. Have you asked the gp why they won’t refer your DD. You do have a right to a second opinion and she would need to see a rheumatologist who is up to speed with the latest diagnostic criteria. Depending on her age and where you are/can get to then Sheffield hospital has a specialist unit.

Fruitinator I’m so sorry about your relative. Vascular EDS doesn’t have a good prognosis I know.

Is it the condition that a lady in coronation street has?

I don't think you can underestimate the medicalisation of American culture.

This is terrifyingly true. As long as your insurance will cover it, there is ALWAYS some treatment to be offered.

I've heard of it. I'm a local authority housing officer and have come across it in applications for rehousing. I've never dealt with anyone with any of the medical aids you mention

I have some friends with EDS and don't know of anyone with it that badly... it does sound like a combination of social media perfomativeness and American private medicine could cause it to be 'overtreated' somehow, which is worrying. It could encourage younger people who have been recently diagnosed with EDS to think they need intervention that's unnecessary.

@TheYearOfSmallThings

I don't think you can underestimate the medicalisation of American culture.

This is terrifyingly true. As long as your insurance will cover it, there is ALWAYS some treatment to be offered.

And if you need any treatment, it's going to cost thousands. Tens of thousands, so anything that could make it possible to pay for the things someone NEEDS resulting from a preexisting medical condition that won't be covered by their parents' insurance or their own when they become too old to be covered as a child (or their parent loses their job and current cover) - well, you've got to do whatever it takes.

Sometimes whatever it takes is to make sure you look disabled and attractive enough to get views, comments and donations. If they had access to free medical care at the point of delivery, we wouldn't see 90% of them online at all.

Do not go to Youtube for anything medical. I don't watch medical stuff there.

I have EDS and it's fairly well managed with medication, physio and a few minor adaptations. My SIL also has it and lies on the sofa expecting everyone else to wait on her hand and foot. She wasn't that bad until she was diagnosed and then when had the diagnosis made a massive deal of it and now dictates when other members of the family go out as she doesn't like being left home alone. She often complain of feeling weak and in pain, but until she was diagnosed she was really active. I don't think lying on the sofa all day has helped at all. She's in her late twenties. I realise it can vary in severity, but sometimes how you respond to it can have an impact too!

I worked on a general surgery ward for 5 years and never saw a single EDS patient. Not sure if it maybe just wasn't as genetically prevalent where I was or perhaps managed differently but if I had someone young with nutritional or elimination issues admitted it was generally chrons or UC

youd be lucky to get any of that treatment in the UK even with quite severe EDS. NHS rheumatologists are reluctant to diagnose and even then I think they just treat dislocations as and when they occur

It does make sense that the vast majority on YouTube are in the US if the health insurance system is contributing to the excessive and aggressive interventions that are shown on these channels. I can’t see these things being done in the UK or at least very rarely, if they weren’t absolutely necessary.

I have a friend with EDS. She’s a paraclimber.

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.

I haven't found conflicting opinions once you get to the right level of specialism. Weve been dealt with by a NHS centre of excellence and our local private physio just so happens to have head of inpatient physio of one of the worlds best children's hospital on her CV. Both advocate the use of supports for the avoidance of injury as well as periods of physical strain and the circumstances you mention. So that means day to day writing for finger splints during the school week and knee and ankle for a days out. Our local hospital physio we apparently didnt even meet the requirements to be seen. Local hospitals are crap dealing with Hypermobility.

(@InDispairThisWeek please do go private if you can it can make a huge huge difference. I have had the local hospital make accusations of maunchesens regarding DS' other difficulties, after I went private the NHS did the test that actually proved the physical cause. Sometime you need to break the nhs doctors covering each others back for bad treatment )

And tbh if you can get through a day walking for example at a theme park without needing supports, you're very lucky. DD can't, she has literally been in the position where she didnt bother with insoles and supports and her ankle could not hold her weight by the end of the day. It literally rolled the second she tried to stand.

I think with anything medical it's easy to judge others by our own experiences instead of thinking maybe I was lucky it wasnt necessary or unlucky I was left untreated where more intervention might have improved my life.

@Rubyupbeat

Is it the condition that a lady in coronation street has?

Yep

I have it, and use a wheelchair 50% because of it and 50% because of comorbidities. I have noticed a tendency for the munchies to claim it though, so you're not wrong about that.

I can’t see these things being done in the UK or at least very rarely, if they weren’t absolutely necessary

Has it occurred to you it might be the other way round. The nhs doesn't advocate some of these interventions because it cant afford them.

Hello OP, we are going to move this one over to the chronic pain board for you now.

Surely like any disease or condition it’s a spectrum? Not everyone has everything and it’s a big world and there’ll be people who are well and people who are badly affected? Like watching the Paralympic there are people with similar disabilities that are in different categories as the same named disability can have different levels of severity.

You don’t know the medical history of every person in the world and it’s great that you are not badly affected by this condition. Yes people who are severely ill do spend their time getting recognition on the internet, some good some bad. But if that’s the only it let people have if they can’t work then people naturally want to get recognised for something. Whether it’s being good at their job/a promotion etc etc

I’m sure there are lots of conditions you haven’t heard of. Anyone getting diagnosed with anything these days knows to not google everything as only the crap stuff makes it. No one wants to read about someone with a diagnoses living normally, they want to see others like them

Branleuse when I was diagnosed it was a real palaver. My local hospital trust referred me to a specialist centre and it was a long appointment . I was only referred after one of my DC who isn’t in the same part of the UK as I am was diagnosed. When they were asked about family history and they said what all my problems were it was advised that to confirm both diagnoses I should be seen.

@Ayearofmad

It does make sense that the vast majority on YouTube are in the US if the health insurance system is contributing to the excessive and aggressive interventions that are shown on these channels. I can’t see these things being done in the UK or at least very rarely, if they weren’t absolutely necessary.

I do t think this will go down well if you are telling everyone in the U.K. you don’t think anyone has a feeding tube. I’m sure there are many many many people that do. Just because they don’t have an internet following doesn’t make people not exist. Just because you are well doesn’t mean there aren’t people that suffer.

There must be so many disabilities and conditions I am ignorant if and don’t know and don’t read about on the internet but I don’t not believe these people exist.

*GreyTV I agree. Many of these channels seem to be women who seem proud of all their procedures and tubes and have made their condition their identity. I can’t see how they would help viewers.

Both my sons have EDS. They have the type that is relatively mild, but it does present significant issues.

If you suffer a chronic disease to that extent it is part of your identity.

Hypermobility of any kind often affects women more due to the hormonal effects on ligaments

If it doesn't help you dont watch. But try not to judge others.