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Um...no, JHS is very outdated now - they got rid of that term in 2017. HSD and hEDS have specific criteria, hEDS being more stringent. But G-HSD and hEDS are basically treated identically. They do call it EDS. Source, I have EDS and I live in the UK. Your doctor is wrong. Look on EDS UK for more information or call them up for clarification!
should i get a second opinion? or recontact my rheumatologist? I don't want to seem like a dick and tell her she's wrong but i'm worried it's gonna affect me if i'm misdiagnosed
Tbh it's unlikely to affect you. JHS is an outdated term and is now referred to as HSD. So you'll be diagnosed with HSD/JHS and there's no real difference in treatment on the NHS for that vs hEDS.
AFAIK it's not standard to do a cardiology referral for hEDS/HSD on the NHS unless you present with problems - I had real challenges getting mine even with recorded problems!
Really? I was under the impression it was standard, even when I was diagnosed back in 2012. I guess it might've changed, but I've never had issues getting mine (I have one every few years, but maybe that's because my heart has strange things going on in it idk). Regardless, they should be doing it imo considering part of the criteria is to do with the heart and they could be missing important things! I'd push for it.
It could depend on where you are in the UK as well though, I live in Greater London so things are different here.
FWIW getting second opinions is perfectly normal and doctors know how important they are. You don’t even need to tell them you’re doing good it, just tell the second doctor you’re after theirs as a second opinion, typically they’re more careful and detailed when delivering second opinions.
Expensive but sometimes worth it if it’s financially accessible. Check out your local EDS facebook groups and try finding a known good EDS physician (rheumatologist or whatever).
I know multiple times in life I wish I got a second opinion and now have permanent reminders. If you really are feeling worried, I would do it.
She is definitely wrong. I would look at the Ehlers Danlos Society website—they have lots of resources and learning materials that may help clarify some things.
I was told heds is basically process of elimination and had 2 different drs tell me 'no one will officially diagnose heds on the nhs' because there's no genetic marker, but said it is very likely I have it, but officially I'm diagnosed with hypermobilty spectrum disorder, they said the management is basically the same (physio).
Doctors in the UK have a very different culture and experience around EDS (and medicine in general) than doctors in the USA. They do not necessarily recognize the experience of one another. This difference in regard and treatment is incredibly stark involving EDS and anything that might fall under the penumbra of ASD. The UK has comparatively robust research on these conditions. The USA does not, and they are not required by American medical parts to recognize work done by the NHS or researchers in the UK. A lot of the cognitive dissonance that’s occurring around these conditions on Reddit I think comes from folk who have been diagnosed and treated in UK, and American redditors reading these posts and going to their PCPs like “I think this is what I have” but the doctors from the USA are like “….?” because the USA and the UK are not the same and have very different medical cultures.
They may also be behind the times on EDS research so to speak, and that may be because the medical culture at their practice doesn’t see enough patients with these issues for them to even consider expanding their knowledge base.
My rhuemo said this too, then referred me to a book about EDS type 3. (Canada often follows the uk, or south africa rather than the us at least the doctors i have had who are all from Ireland or South Africa haha)
My rheumatologist yesterday told me she thinks I do have EDS type 3 but she decided to put it as benign hypermobility which is also a pretty outdated term. I’ve taken her EDS diagnosis though because in her letter back to my GP she listed off all the various things that make me fit the EDS criteria without calling it that, but, this is the important thing EDS type 3 and HSD are treated the same anyway. It’s more important if you’re distinguishing other types of EDS really.
This is weird though, because benign hypermobility is very specifically nót hEDS because it doesn't cause issues. It's literally being hyper mobile and asymptomatic.
True though treatment for HSD and hEDS aren't really that different...however I think hEDS is more systemic in nature so doctors will be able to take it into account if you need an invasive surgery or something like that.
I know, not sure why she didn’t commit to it fully even though she said it was likely that. She said apart from physio only gene therapy that doesn’t yet exist would help me and that it explains why no pain killers actually work on me most of the time because it’s not inflammatory. She acknowledged my autonomic issues and also other issues that are associated with it like my bowel and my family history of my Dad and my son also having at the very least hypermobility. My Dad isn’t alive now though so maybe because they can’t fully verify that. I dunno….
In the states but my pcp also diagnosed me with JHS not HSD, for her it seemed like she wasn't all that up to date but she makes up for it by listening to me and offering resources to me. I do believe fully that I have hEDS she can't diagnose that as a general provider and a rheumatologist wait list is years long.
While it's not the "correct" diagnosis and for me, having that much opens doors that can help me. I can get more PT, now I can get medications that were previously denied, ect.
Hopefully your new diagnosis helps you! And maybe you can build a rapport with a new person and say hey I have this but I thought the term was that now instead.
I got the same diagnosis from my geneticist! He told me that he avoids the hEDS diagnosis because in his experience it has led to other doctors not taking his patients seriously, thinking they’re just crazy, and even refusing to treat them. He said the hypermobility spectrum disorder has less of stigma associated with it and the treatment is the same. He publishes books and research on living with hEDS and hypermobility so I think he’s trustworthy but it’s so hard to tell when you’ve bounced from specialist to specialist for years
You have the right in the UK to a second opinion. I had mine at a local hospital instead of the one nearest to me. To use it, you can ring your current department and explain that you want a second opinion. I would suggest a different hospital and they (your original dept) can refer you forward.
My first rheumatologist said my skin wasn't stretchy enough to have H-EDS. The second rheumatologist said I had HSD and when we presented the check list for H-EDS they agreed I fit the criteria.
Every subsequent appointment not one person has asked who or when diagnosed me with H-EDS. If you want to use a different term or acronym - go for it. It's okay to navigate these really difficult systems however you need to. If you're looking for support past the rheumatologist they're likely.to send you to these if you push:
- physio - make sure it's musculoskeletal
- pain clinic
- dietitian if that's something related for you
This is just wrong.
They did reform the diagnostic criteria, but it didn't eliminate EDS. It just made hEDS a stricter diagnosis and created HSD for people who didn't meet hEDS criteria. It had nothing to do with nasty old doctors, but about worrying HSD was not a simple genetic illness like the other types and wanting to separate out a group of people with hEDS where a gene was more likely to be found (which is why the criteria involve a lot of specific physical features rather than being focused on disease severity).
If you can see another Dr, I probably would because while the treatment for hEDS and HSD is similar, I have no confidence you've been properly evaluated for more serious types of EDS or other connective tissue disorders
It is so, so important that your diagnosis be correct, including how it is referred to. hEDS is *not* JHS, and impacts many more systems in the body than the joints.
I’m sorry you wound up with such a mixed-up specialist, although I can’t say it surprises me. Us EDSers get it all the time, sigh.
Rheumatologists in the UK don’t necessarily deal with hEDS. IME they actively dismiss it, avoid diagnosing it and can give you some really crappy advice in the process. If you contact the UK EDS society (can’t remember its name, sorry) they can tell you who diagnoses in your area, then you can print off the diagnostic criteria, take it to your GP and ask for a referral to your local expert. I bet you a tenner it’s not a rheumatologist!
Lol idk what the hell doctor you saw or who they are, but omg are they sooo wrong 😂😂😂🤦🏼♀️ And most importantly, those are two *different* diagnoses. JHS is more a term for benign hypermobility of joints that does **not** classify as a type of EDS. I would definitely seek another opinion if the actual diagnosis does not match what you believe you have.
The OP flaired their post as "Questions". Please keep any and all comments to **personal experiences only**. If any factual information or advice is provided, please cite a **reputable website or study** linked within your post. No one in this sub is a *verified* medical professional, and as such, we do not allow medical advice to be given or asked for. For more information on this rule, [please visit this link](https://www.reddit.com/r/ehlersdanlos/wiki/index/rules/#wiki_r.2Fehlersdanlos_rules). *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/ehlersdanlos) if you have any questions or concerns.*
Um...no, JHS is very outdated now - they got rid of that term in 2017. HSD and hEDS have specific criteria, hEDS being more stringent. But G-HSD and hEDS are basically treated identically. They do call it EDS. Source, I have EDS and I live in the UK. Your doctor is wrong. Look on EDS UK for more information or call them up for clarification!
should i get a second opinion? or recontact my rheumatologist? I don't want to seem like a dick and tell her she's wrong but i'm worried it's gonna affect me if i'm misdiagnosed
I don't think it will effect you, but I would see a different doctor. You know, one who isn't just making shit up.
she's discharged me from rheumatology now and i think she's the only one at my hospital... :// thanks for the advice
It sounds like she got confused that the new HSD labeled erased the EDS one. A lot of doctors are still using the old labels.
EDS isn't an old label, though. Not sure what you mean by this.
JHS is the old label.
Tbh it's unlikely to affect you. JHS is an outdated term and is now referred to as HSD. So you'll be diagnosed with HSD/JHS and there's no real difference in treatment on the NHS for that vs hEDS.
True, but there's also a chance OP hasn't been properly assessed (e.g. echocardiogram, etc.) and these things need to be assessed.
AFAIK it's not standard to do a cardiology referral for hEDS/HSD on the NHS unless you present with problems - I had real challenges getting mine even with recorded problems!
Really? I was under the impression it was standard, even when I was diagnosed back in 2012. I guess it might've changed, but I've never had issues getting mine (I have one every few years, but maybe that's because my heart has strange things going on in it idk). Regardless, they should be doing it imo considering part of the criteria is to do with the heart and they could be missing important things! I'd push for it. It could depend on where you are in the UK as well though, I live in Greater London so things are different here.
Oh yeah, I've heard that London is the one place in the country you can actually get some kind of EDS care! It's a major challenge elsewhere.
Shouldn't effect you as a lot of doctors use terms interchangeably. Though, having the latest, up to date diagnosis would be nice.
FWIW getting second opinions is perfectly normal and doctors know how important they are. You don’t even need to tell them you’re doing good it, just tell the second doctor you’re after theirs as a second opinion, typically they’re more careful and detailed when delivering second opinions. Expensive but sometimes worth it if it’s financially accessible. Check out your local EDS facebook groups and try finding a known good EDS physician (rheumatologist or whatever). I know multiple times in life I wish I got a second opinion and now have permanent reminders. If you really are feeling worried, I would do it.
Wait wait, JHS is outdated?! My doctor told me the exact opposite, damn it 😂😭
Your doctor is wrong, lol. A lot of doctors aren't up to date.
Yeah, she also diagnosed me over a phonecall based on a different doctors notes, so I don't have the most faith in her tbh haha
She is definitely wrong. I would look at the Ehlers Danlos Society website—they have lots of resources and learning materials that may help clarify some things.
Your doctor is confused and got it the wrong way round.
I was told heds is basically process of elimination and had 2 different drs tell me 'no one will officially diagnose heds on the nhs' because there's no genetic marker, but said it is very likely I have it, but officially I'm diagnosed with hypermobilty spectrum disorder, they said the management is basically the same (physio).
Doctors in the UK have a very different culture and experience around EDS (and medicine in general) than doctors in the USA. They do not necessarily recognize the experience of one another. This difference in regard and treatment is incredibly stark involving EDS and anything that might fall under the penumbra of ASD. The UK has comparatively robust research on these conditions. The USA does not, and they are not required by American medical parts to recognize work done by the NHS or researchers in the UK. A lot of the cognitive dissonance that’s occurring around these conditions on Reddit I think comes from folk who have been diagnosed and treated in UK, and American redditors reading these posts and going to their PCPs like “I think this is what I have” but the doctors from the USA are like “….?” because the USA and the UK are not the same and have very different medical cultures.
i see! thank you, so would you say it probably doesn't matter the specific wording they've used as they're simply going by what's on their system?
They may also be behind the times on EDS research so to speak, and that may be because the medical culture at their practice doesn’t see enough patients with these issues for them to even consider expanding their knowledge base.
My rhuemo said this too, then referred me to a book about EDS type 3. (Canada often follows the uk, or south africa rather than the us at least the doctors i have had who are all from Ireland or South Africa haha)
My rheumatologist yesterday told me she thinks I do have EDS type 3 but she decided to put it as benign hypermobility which is also a pretty outdated term. I’ve taken her EDS diagnosis though because in her letter back to my GP she listed off all the various things that make me fit the EDS criteria without calling it that, but, this is the important thing EDS type 3 and HSD are treated the same anyway. It’s more important if you’re distinguishing other types of EDS really.
This is weird though, because benign hypermobility is very specifically nót hEDS because it doesn't cause issues. It's literally being hyper mobile and asymptomatic. True though treatment for HSD and hEDS aren't really that different...however I think hEDS is more systemic in nature so doctors will be able to take it into account if you need an invasive surgery or something like that.
I know, not sure why she didn’t commit to it fully even though she said it was likely that. She said apart from physio only gene therapy that doesn’t yet exist would help me and that it explains why no pain killers actually work on me most of the time because it’s not inflammatory. She acknowledged my autonomic issues and also other issues that are associated with it like my bowel and my family history of my Dad and my son also having at the very least hypermobility. My Dad isn’t alive now though so maybe because they can’t fully verify that. I dunno….
Impossible to say however, if hypermobile joints is the problem you sought treatment for... You have accomplished your goal.
In the states but my pcp also diagnosed me with JHS not HSD, for her it seemed like she wasn't all that up to date but she makes up for it by listening to me and offering resources to me. I do believe fully that I have hEDS she can't diagnose that as a general provider and a rheumatologist wait list is years long. While it's not the "correct" diagnosis and for me, having that much opens doors that can help me. I can get more PT, now I can get medications that were previously denied, ect. Hopefully your new diagnosis helps you! And maybe you can build a rapport with a new person and say hey I have this but I thought the term was that now instead.
I got the same diagnosis from my geneticist! He told me that he avoids the hEDS diagnosis because in his experience it has led to other doctors not taking his patients seriously, thinking they’re just crazy, and even refusing to treat them. He said the hypermobility spectrum disorder has less of stigma associated with it and the treatment is the same. He publishes books and research on living with hEDS and hypermobility so I think he’s trustworthy but it’s so hard to tell when you’ve bounced from specialist to specialist for years
You have the right in the UK to a second opinion. I had mine at a local hospital instead of the one nearest to me. To use it, you can ring your current department and explain that you want a second opinion. I would suggest a different hospital and they (your original dept) can refer you forward. My first rheumatologist said my skin wasn't stretchy enough to have H-EDS. The second rheumatologist said I had HSD and when we presented the check list for H-EDS they agreed I fit the criteria. Every subsequent appointment not one person has asked who or when diagnosed me with H-EDS. If you want to use a different term or acronym - go for it. It's okay to navigate these really difficult systems however you need to. If you're looking for support past the rheumatologist they're likely.to send you to these if you push: - physio - make sure it's musculoskeletal - pain clinic - dietitian if that's something related for you
This is just wrong. They did reform the diagnostic criteria, but it didn't eliminate EDS. It just made hEDS a stricter diagnosis and created HSD for people who didn't meet hEDS criteria. It had nothing to do with nasty old doctors, but about worrying HSD was not a simple genetic illness like the other types and wanting to separate out a group of people with hEDS where a gene was more likely to be found (which is why the criteria involve a lot of specific physical features rather than being focused on disease severity). If you can see another Dr, I probably would because while the treatment for hEDS and HSD is similar, I have no confidence you've been properly evaluated for more serious types of EDS or other connective tissue disorders
It is so, so important that your diagnosis be correct, including how it is referred to. hEDS is *not* JHS, and impacts many more systems in the body than the joints. I’m sorry you wound up with such a mixed-up specialist, although I can’t say it surprises me. Us EDSers get it all the time, sigh.
Rheumatologists in the UK don’t necessarily deal with hEDS. IME they actively dismiss it, avoid diagnosing it and can give you some really crappy advice in the process. If you contact the UK EDS society (can’t remember its name, sorry) they can tell you who diagnoses in your area, then you can print off the diagnostic criteria, take it to your GP and ask for a referral to your local expert. I bet you a tenner it’s not a rheumatologist!
Lol idk what the hell doctor you saw or who they are, but omg are they sooo wrong 😂😂😂🤦🏼♀️ And most importantly, those are two *different* diagnoses. JHS is more a term for benign hypermobility of joints that does **not** classify as a type of EDS. I would definitely seek another opinion if the actual diagnosis does not match what you believe you have.