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?

I have EDS as have half my family. We're a mixed bunch, some super mild, normal life. One has a rare kidney disorder because of it and in and out of hospital. I have it pretty severe, worst out of all my family but I don't use braces, wheelchair etc no feeding tube.

I was in a Facebook group that was US based for EDS and I was stunned at all the surgery's they keep having, some were on their 20th something surgery! It doesn't help and can even make things worse in the long run. Feeding tubes, ports the lot. I didn't stay in that group for long.

The doctor wouldn’t refer to a specialist because of COVID, they asked her to do an initial assessment, even though dd was assessed by a physiotherapist as a 7 on the scale, the doctor said she had to do an assessment herself, she read from a bit of paper and had to look things up on line, she ignored things like dd’s ankles/ fingers and said dd was only a 3, she dismissed the stretch marks and other skin idiosyncrasies and basically sent us away, we’ll go back in the next few weeks because dd wants confirmation of POTs (she has it on video that her heart rate increases by over 40 beats per minute when she stands from lying down). When we go to the doctors they only want to focus on one thing at a time and won’t link everything they look at us like we’re mad - for example we went to the doctor years ago for pain management because most otc pain killers just don’t work fo dd and they just kept saying take a mix of paracetamol and ibuprofen, they just didn’t listen.

Unfortunately because she is 17 they don’t want me to talk for her but she is very anxious about talking to people so we’ll make a list.

Sorry, bit of a rant there but it’s so frustrating

@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.

Don't forget that the US is vastly larger than the UK - just by sheer weight of numbers, you will get a greater number of people with all variations of EDS and also with the most severe presentations there than you would in a country as small as this.

I'm a little nervous of implying that these people are exaggerating their condition, just because it's something I've had leveled at me a lot (including by health care professionals who should know better). And I'm aware there's a lot of conflicting information out there about how to manage EDS/HSD, which may account for them using aids when others might not in the same circumstances. I can also see the appeal in using aids in order to make an invisible disability visible to others, especially in younger people who do come up against a lot of resistance to the idea they could possibly be struggling. I know when my pain started aged 24 I had a lot of people tell me I couldn't possibly be in that much pain at my age, or that I didn't look ill.

I'm also aware that, compared to a lot of people, my condition is very mild.

One of my best friends has ED and it's one of the reasons we have been so close over the years because I have rheumatoid arthritis and so although the conditions are different we both know the struggles of chronic but largely invisible conditions.
She has had some major surgeries and some really bad times but to look at her without knowledge most people wouldn't know there was anything wrong with her.
Our eldest kids are both born within a few weeks of each other we both had difficult pregnancies at the same time due to our conditions so that was also another thing we bonded over.

I think my son has Eds we have an appointment with a rheumatologist in october, he is tall hypermobile clicky joints fragile skin and faints.
I do think on the internet you have emotional vampires. They seem to latch onto anything that is a spectrum because then they can roleplay as much or as little as they feel like on a particular day.
They are usually the ones who bleat on about how not being diagnosed doesn't make you non valid. You get a lot of them hanging around autism. I just try to ignore it as much as possible.

I was diagnosed over 20 years ago by an NHS rheumatologist (which seems to have been pretty rare then?) and basically got told nothing they can do, be careful with sports and I'd probably crutches or a wheelchair in my 30s (nicely presented too, wasn't at all traumatised as a 15 year old to hear that). I'm approaching 40 and am going to need a hip replacement, but they are trying to leave it as long as possible because of the complications for EDS patients. I've been told to stay away from braces and splints as much as possible, except after a dislocation, to avoid further weakening the joints. I do use kineo tape on my knees, hip and shoulders when I am doing exercise (although the skin issues that come with EDS make taking the tape off without taking the skin pretty tricky!). I have POTS too, but I think I have EDS pretty mildly compare to some and I do still seem to build some muscle which makes me pretty lucky I think. I have some breathing problems from the scoliosis. I get a fair few aches and pains from exercising and of course have had a lot of tendonitis, but it's a more bearable pain than the pain I get when I am less active, IFYSWIM, and I certainly have fewer dislocations when I'm more active, but it can be so hard to push through sometimes!

I avoid reading about EDS on the internet as a general rule. I found FB groups were full of such lovely people, but reading about the kind of problems we go through just made me feel pretty negative. I try to think or talk about it as little as possible. Only downside to that is that people don't appreciate how bad it is sometimes.

Wow, turns out I had a lot to get off my chest about it

@InDispairThisWeek

There is no a GP toolkit on the Royal College of General Practitioners website. Google EDS Toolkit. They are bound to follow the advice on there if you signpost them to it. It basically says is patient presents with x, y or a you just refer to Rheumatology. Also. There is now a diagnostic checklist for hEDS which basically confirms you have it if you tick the minimum required number of boxes in each section. The starting point is the score on the Beighton scale. I have used both in order to get my own diagnosis, and am now in the process of getting DD diagnosed. If you still come across stunning blocks, then EDS support UK can help with finding an EDS aware practitioner near you. This is important whether you go NHS or private. I tried private about 2 years ago, but did not get an EDS aware Rheumy so was wasted money in the end (he said my skin wasn't stretchy enough, which is not necessarily a factor other than in classical EDS)

Anyway, if nothing else this thread has been a great way of raising awareness of the condition. So thanks OP.

Screenshot of the Diagnostic Criteria below. Worth printing off, going through or taking to any appt. It's how I got diagnosed. Medical people tend to argue less when something is in black and white. And they can't blame their own lack of knowledge, when you are bringing the knowledge to them.

@Ayearofmad your post makes me really sad. I've got severe chronic health conditions that have completely changed my life and have spent a lifetime having people not believe me or think im exaggerating or hearing people say they know someone who had that but they werent as bad as if I'm making it up. I've felt completely alone a lot of the time and it is only through having the online chronic illness community and seeing other people going through the same thing that has helped me not feel so ashamed. I used to hide away and not tell people I was sick, refused to use a wheelchair even though I needed one. Seeing the way other people handle it has really helped, it also makes you see how others cope in a serious situation. Just because you're lucky enough not to be as affected as badly doesn't mean other people are the same as you and to say they're proud of it, well what do you want them to be, ashamed? Feeding tubes, stoma bags are part of them now so why wouldn't they talk about it. Its probably taken them a long time to come to terms with it and they should be proud that they've gone through all that and come out the other side. . I imagine if I suddenly needed a stoma or feeding tube it would be very frightening and you would want to find someone who had already gone through it and could give you hope and advice about what your life will be like. If you didn't see anyone like that it would make you feel completely alone.

Also with EDS it may not be the EDS itself that makes them so severe but the other related conditions such as POTS and gastroperisis. Maybe these people want to help raise awareness so other people don't feel alone and also to educate people (which definitely sounds like its needed) give advice, feel like they're doing something worthwhile and if they can't earn money in other ways this might be all they can think of to do so why shouldn't they? Being ill is really expensive so maybe they have to do that to pay for the stuff they need. Just because you haven't met anyone that bad doesn't mean they aren't out there and maybe the US are better at dealing with these conditions and helping people. All illnesses are on a spectrum and no two people are the same. I find it sad that people are judging whether they are sick enough or not. One of the girls I followed with those conditions recently died due to related problems and she was only in her 20s and people had said things about her that she was exaggerating and doing it for attention, well now she's dead so obviously wasn't exaggerating. I'm so scared of doing things like use a disabled bay or claim benefits and things I'm entitled to all because of other people's judgements and this is a prime example of why as I don't want people deciding whether I'm sick enough for them. I also highly doubt people are putting themselves through major operations for no reason and that doctors are agreeing to this too.

That should be now a GP toolkit not no.
Sorry, hands hurt and voice activated messaging isn't perfect either.

Thanks RainbowZebraWarrior, I’ll have a look and we’ll keep pushing for some answers.

I've heard of it, a girl I was friends with in our early 20s had it. She was always having injuries like dislocating her toe or something and at times needed to use a wheelchair.

I think it's like anything else, I mean I work in mental health and the amount of young ones I see making tik toks about their mental health from their hospital room. A few of our patients have gotten involved in this and the picture they paint compared to the reality is like chalk and cheese. It always seems to be the ones who are least ill who make these performative social media posts making out that they are severely unwell. In reality, it's those who just quietly get on with it that are the most ill, they are using all their energy just getting through the day.

@Gilead

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.

Both my daughters have EDS. I know most suffer constipation as a result. My older daughter has had diarrhoea literally since birth. When I asked if 16 dirty nappies a day was usual she replied if it's normal for her it's normal.

She was diagnosed with bile acid malabsorption before she was diagnosed EDS.

I'm wondering if it's more to do with EDS than BAM then?

She doesn't get on with the BAM drugs. This condition can quite severely restrict her lifestyle.

The drugs for BAM sequestered the birth control she was on which led to an unplanned pregnancy. Later told oh yes this drug can do that. Why wasn't she told beforehand?

One thing you might want to remember is that one illness isn’t treated the same way in two different countries.

Eg I have a fibroid, got pg. Gyne In France told me I was crazy to get pg with it and I should have had surgery first. I got a right telling off
Gyne in the U.K. laughed at me when I explained I was worried about fibroid (re the french consultant comment). I got told off too!!
Basically France wants to do interventions very early on ‘as prevention’. The U.K. doesn’t do anything unless absolutely necessary

Maybe there is a similar phenomenon with the USA too where they intervene early on?? That would explain the many braces and surgeries they have.

My relative has the type of EDS which affects the joints and blood vessels. She doesn’t talk about it to me so I don’t know if she’s YouTubed it, but when she was diagnosed it was before the boom of influencers so hopefully she didn’t see any of it at that time! It was bad enough what the doctors told her.

There probably is a happy medium between US-style "give them all the ops possible" (aka take all of the money) and Uk-style "avoid ops as much as possible" (aka don't spend any money)

And I'd never for a second accuse a particular person of faking/playing-up as I know what it feels like to be seen as a drama Queen. That said, I have still noticed it is a condition frequently claimed (alongside a bingo card of other things - ND definitely one of them) by people who seem to be after the attention and show no evidence of it

Excuse the massive post, but the OP concerned me as they seem to be dismissing other people’s experience of EDS, because it’s not the same as theirs. It is a spectrum disorder, there is a constellation of symptoms and comorbid conditions and no two people present the same. There is EDS in my family and each person presents and is affected differently.

My mum, now 75, has hEDS and was only diagnosed in her 60s. She is the worst affected from a cardiac and bone/joint point of view and was hospitalised for a very long time as a teen. She has been significantly disabled her whole life with no diagnosis or support until the last 10 years and even now, with a diagnosis, she has to fight for support and is often dismissed or doctors don’t know what to do with her. My older sister has only started having problems in her 50s and my younger sister in her 30s. Neither has been referred for an EDS assessment, despite having clear signs and comorbid conditions.

My oldest ds is the most hypermobile of my dcs, but was refused an assessment (the GP wanted him assessed not me) ‘because he has ASD’, he also has gastro and skin issues and a bleeding/clotting problem that seems to be common in EDS, but with the way the NHS works, no-one joins the dots.

My middle dc was diagnosed hEDS last year at the age of 17. He has had lots of problems since he was tiny. He was first assessed age 8 and at that point none of us had even heard of EDS. He was seen by a Community Paediatrician, who said he’d never come across a child who was so hypermobile and acknowledged all his pain and issues, but refused to refer on and only diagnosed ‘lax ligaments’. Thankfully our lovely Community OT made sure support was put in at school and he managed ok for the rest of primary school with adjustments being made.

Things got a lot worse when he started secondary school. By the end o Y7 he was in a very bad way and was finally referred to Rheumatology, where we were told ‘this hospital does not believe hEDS exists in children’. The report just said ‘Hypermobility’. He was sent to a ‘Hypermobility Awareness Group’ where the children were told none of their other health issues had anything to do with them being hypermobile and hEDS doesn’t happen in children! All they needed to do was take up a sport and they would be fine. He was seen by specialist rheumatology physios, who really struggled, seemed unable to help and eventually discharged him. He developed PoTS/Autonomic Dysfunction and lots of other issues (eg bowel/bladder). By year 9, after gradually declining attendance, multiple medical incidents in school and constantly being sent home when he was in, he ended up too sick to attend school. He was tutored by the LA through his GCSEs, but had to drop from 10 subjects to just Maths and English and went from expected A’s (or whatever the equivalent number is now) to a B and a C. He has now been out of education for a year, while we wrangle with the LA for his EHCP. When that is complete he will be studying online.

He is the most upbeat, positive person I know. His life is incredibly restricted by his health, but he keeps up his interests and has aspirations to work towards. He makes the most of what he can do each day. He can’t walk far or stand for very long, so (on advice from his doctors) we hire a wheelchair for family days out. He has specialist crutches for when his hip, knee, ankles are a problem, as with normal crutches his shoulders dislocate (which is how he ended up with bilateral shoulder dislocations, resulting in him being unable to do anything for himself while he recovered). He dislocates constantly, but we know when/how to manage the dislocations at home and when he needs to be seen in A&E. At one point he was in and out of A&E constantly, because he had repeated falls down the stairs due passing out at the top with his PoTS. Thankfully the PoTS is now better controlled by meds and he has management strategies to avoid similar falls. He suffers with extreme fatigue, severe brain fog and chronic pain, has to pace and plan very carefully and his life is often confined to our house for months on end, other than attending medical appointments. The only time he has left the house throughout the pandemic has been for medical appointments and this week to have his vaccination. I am extremely proud of how positive he is in the face of all his issue and the amount of pain he deals with.

We have never ‘doctor shopped’. In fact we try to deal with it ourselves as much as possible, knowing how dismissive a lot of UK doctors are regarding EDS. However, when he is seen, it is obvious to medical professionals that he has serious problems and we have been very lucky with his care, compared to many others.

Youngest dd is very hypermobile but, so far, the least affected. She is very fit, but only just starting to be hit with the hormones that could potentially trigger things for her. She has already dislocated her jaw (whilst just sitting reading) and has daily subluxes, but just gets on with things.

I am not diagnosed, but have just been referred for assessment. (I have never asked to be assessed, despite ds2’s doctors saying they think it’s highly likely I also have hEDS, but now being over 50, my issues and pain levels are escalating and my doctor pushed for me to agree to assessment). I am diagnosed with PoTS, which was traced back to my childhood at diagnosis. I spent most of my younger adult years been put through endless tests, because no-one knew what was wrong with me, I was told at one point that they thought I had Lupus, as I met some markers for that, then they thought MS. Finally I was told they knew there was something going on, but not what, so I would be monitored annually and to go back when something serious, like paralysis or loss of bowel or bladder occurred! I also had multiple GPs suggest it was ME.

To be honest I am still not bothered about getting a diagnosis, it brings very little help and I am already aware of and use self-management strategies. I do need help with certain issues now, but I doubt a hEDS diagnosis will help with that anyway, as there is no joined up care. I try to stay active, as I can’t afford to lose condition and deteriorate, as I need to care for ds2, but I am struggling now and some of my problems have reached the point where I can’t ignore them anymore, hence agreeing to the referral.

We tent to avoid online blogs/vlogs/YouTube channels, as being a spectrum disorder, no two cases are the same and everyone’s experience will be different. There are some people who seem to make it their whole identity and spend all their time making videos etc about it, but I think they are in the minority. I can see how it can happen, because EDS can affect your whole body and affect every aspect of your life and particularly in the UK, there is very little knowledge or support from medical professionals. (If you do find some, it is usually in central London and nigh on impossible to get a referral.) If you are stuck at home alone 24/7 dealing with systemic issues and chronic pain, your only link to the outside world is the internet. Some choose to use it to raise awareness about these conditions, others as a way of reaching out for support, being heard and validated. Chronic illness can be a very lonely place, especially when you have a condition that is so contentious with the medical community. It doesn’t help when people speculate that you aren’t as ill as you say you are.

I know several teens with feeding tubes and ports, as sadly Gastroparesis is more common in EDS and PoTS than in the general population.

For ds2 EDS/PoTS is his whole life, but it doesn’t define him and he tries to focus on his interests and keeping in touch with his friends, even though he rarely gets to see them. He chooses not to watch the videos etc, as the last thing he wants is to spend his time thinking about EDS/PoTS, he wants, distraction, entertainment, learning new skills and socialising with his friends, even if that can only be online.

My dc have EDS and various other conditions

We were told we had ‘too many medical problems for one family’ and that ‘EDS is a red flag condition’ (alongside some others my dc had - allergies and food problems and ME and pots) they then accused me of FII (new name for munchausens by proxy)

Surely it depends on which kind of EDS they have? I don't want to make the assumption that they're doing "unnecessary" things because I don't understand the other versions of EDS, I only understand the hypermobile version, and then only my version of that.

Hi OP. I have EDS (type 3) as well as POTS and mast cell activation which typically occur belong side it. I’m in the UK.

I’m 24 now and got diagnosed when I was 18. I was sick as a child but nobody knew what was wrong with me and I think they brushed it off as my Mum being anxious. I struggled with my knees and hips dislocating a lot and spent most of ages 13-15 on crutches and when I was 14 I had my knee pinned (much to my annoyance now).

When I went to uni I got really, really sick. I went from a size 14 to a size 6 in around 6 weeks, I was in so much pain all the time, I couldn’t stop throwing up, I was passing out, my stomach issues flared up and I seemed to be having allergic reactions all the time. Nobody knew what on earth was wrong with me until I was referred to a rheumatologist who then referred me to a genticist. Things went really fast from there and I was referred to a rheumatologist who specialised in EDS, an immunologist, cardiologist, a dermatologist, orthotics, gastro, physio etc. The rheumatologist told me if my body carried on the way it was that I’d be in a wheelchair within the next ten years.

I saw an NHS physio every week for about three years to try and build up my strength and I noticeably have so much more muscle now than I did then. I go to the gym 5 times a week and attend fitness classes. However I do have finger braces, which orthotics made for me upon diagnosis which I do wear when I’m writing as my fingers tend to dislocate every single time I write more than two sentences. I have a knee brace (which I’m discouraged from wearing unless I have a bad dislocation) and crutches which I haven’t used for years but I’m scared of getting rid of incase I need them. I don’t look sick. But I am. I’m currently having investigations by gastro because I have chronic bleeding and seem to have absorption issues where my body just won’t absorb vitamins but they haven’t found out what on earth is wrong with me despite having 2x colonoscopys, 2x endoscopys, a sigmoidoscopy, a small bowel mri and a pill into my bowel. However if I was offered a stoma I would refuse unless gastro told me it was a life of death situation.

I currently take 41 different tablets every day (11 for my POTS, 16 for my mast cell and the rest for my EDS), have b12 injections every 12 weeks, have weekly saline therapy for my POTS in the summer (as soon as it gets warm I start to pass out at least once a day) and I’m being referred to haematology to see if I’m a candidate for iron injections. A few months ago I had my first epidural for pain, which did help but has worn off now. I also have yearly ultrasounds on my heart as I have tricuspid regurgitation. I’m also on immunosuppressants because my rheumatologist is adamant I have some other kind of connective tissue issue as well because I have a lot of symptoms which aren’t typical of EDS (possibly lupus), but she has no idea what.

It looks weird typing it all down because if you looked at me you genuinely wouldn’t know I had anything wrong with me and I’ve been called a liar by previous employers despite providing proof because it’s so hard to understand. I have a blue badge because if I have a flare up I get really, really sick very fast but I try not to use it incase I get accosted in the car park because I don’t look sick. I don’t carry a medical pack as such but I do carry pain killers, heart meds, antihistamines and an epi pen with me. I’m aware that I receive a lot of treatments and I’m on a lot of medication in comparison to a lot of people with EDS but it allows me to live my life, without it I would be completely bed bound.

I went to school with a girl who had the same diagnosis’ and is an elective wheelchair user for anything that requires more than a ten minute walk because she dislocates that easy. But doesn’t get any infusions or anything like I do. EDS really is a wide spectrum like any condition. I think the chronic illness community can be quite dangerous though. I’m member of a few pages on Facebook and I don’t really use them because I’ve found it to be quite competitive. There’s a lot of ‘I’m more sick than you’ or ‘how do you get that treatment when I’m worse’. They revised the EDS criteria a few years ago because a lot of rheumatologists were diagnosing it due to bad hypermobility and dislocations and my rheumatologist told me a lot of people don’t fit the criteria anymore. I’ve seen absolute uproar from people on these pages who have had their diagnosis’ changed fo HSD. But regardless of that, EDS really is on a huge spectrum on how it effects people.

I wentvto a fantastic lecture once by a private specialist in EDS (based at the hospital of St John and St Elizabeth so yes in London). He showed us a huge spider diagram of all the variations of EDS, there are so so many. So it makes sense that experiences of the condition will be incredibly different.

He was clear that for most of the variants, problems would either be minor or quite significant but helped a lot with specialist physio plus support to become an expert in self managing symptoms, which of course most people with chronic conditions have to be. For some rare variants, problems would be much more significant.

What I can't stand about the NHS approach is lack of interest in diagnosing. People have every right to understand their own bodies. And if people were correctly diagnosed, the proportion with mild/no symptoms would be better understoodand the severe cases would have more context.

But I do think the USA approach tends to overintervention in the insured. 65% of the US is on at least one prescription drug.

I also think a lot of the medical interaction in America might be because they just… know more? The amount of times I’ve gone to the GP and not seen my usual one and they’ve said something stupid like ‘oh it’s that bendy thing right?’ and ‘that doesn’t seem like an EDS thing’ when it is. Ive had professionals ask me ‘what’s that mean’ before too. The lack of knowledge is quite shocking.

I’m currently fighting for treatment for my MCAS because I’m constantly going into anaphylactic shock and nobody knows what to do about it or how to help. I’m having to print off how they treat it in America and bring it to my consultations so they have an idea of what’s best to do.

I agree that lack of continuous and collaborative care is a huge problem in the UK. We never see the same GP twice either. We did have a really good newly qualified GP, who was really interested in EDS, so we would always try to book in with her, but she left on maternity leave and didn’t return.

We get the opposite problem to ‘that doesn’t seem likean EDS thing’ where every time either ds or I are ill, it’s automatically put down to ‘probably just a PoTS/Autonomic issue’ by doctors that know little or nothing about PoTS/Autonomic Dysfunction and nothing is done to help. Although conversely ds’s bladder issues have confounded the urologist and they know nothing about the ways PoTS/AD and comorbids like MCAS can affect the bladder.

Also, despite the 2017 criteria, a shocking number of medical professionals are still referring to old criteria and diagnosing JHS/BJHS/Type III etc, seemingly having no idea of the new diagnostic criteria and terminology and assuming EDS is just being ‘a bit bendy’. I was so relieved when my ds moved to adult care, was referred to rheumatology by his Cardiologist and at his appointment they had the 2017 criteria checklist there to assess him against.

The most impressive and understanding medical professionals I have come across in the UK have, co-incidentally maybe, all been Internal Medicine Specialists and it turned out that the Rheumatologist that diagnosed ds was also an IMS. They are trained to look at the whole body, all the symptoms and draw a conclusion from the bigger picture, rather than focussing on one area of the body and ignoring the rest. Incidentally, it was an IMS on shift in A&E that finally sorted my Mum being assessed and diagnosed. She’d been under Rheumatology since her teens, but not one doctor ever considered EDS. I was also treated by an IMS in the AMU and he actually apologised for not being able to do enough to help, explaining that the way the NHS works restricts his ability to look at and treat systemic issues, as it works on the basis of compartmentalising the body’s systems, when conditions like this require a whole body approach.

@Muthapuppa

Also, despite the 2017 criteria, a shocking number of medical professionals are still referring to old criteria and diagnosing JHS/BJHS/Type III etc, seemingly having no idea of the new diagnostic criteria and terminology and assuming EDS is just being ‘a bit bendy’.

I actually agree with this I recently saw an immunologist and when I received a copy of my clinical notes which they sent to my GP under my diagnosis they put ‘HSD the same as EDS’ WTF!!

Whilst I do think that the online chronic illness can be dangerous at times it really is no wonder that it is so competitive when we all receive completely different treatment and it seems to be sheer pot luck if we end up with a good clinician which decent understanding or not. Whilst I do have a good treatment plan I do think it’s a completely neglected condition in this country and there are no set guidelines for treatment so doctors try their best to fob us off.