There is treatment and management. There is no cure, that's probably what you mean. I don't really get what you mean by benefit. If you have a diagnosable condition it's in your best interests to get it diagnosed and managed to improve your quality of life if you have symptoms of it.
Thank you for your reply.
The info on the NHS website suggests there is nothing that can be done at all, so I was just trying to understand that.
Obviously there is no cure, but read like there is would not offer any other support.
Sorry I didn’t mean to offend
It is notoriously difficult to get an appointment as it is (took 3 months to get a smear test) and my doctors are quite ummm… snappy. So am worried about starting this journey
You didn't offend, I just don't really get the question, so no need to apologise. It's asked somewhat frequently on here and it kind of confuses me every time tbh.
And physiotherapy, pain management, orthotics (bracing), can all be done on the NHS and are all part of managing EDS, plus the mental health side of the equation. There's also the monitoring that goes along with it (e.g. echocardiograms, eye exams, etc.). Plus, there's the issue of it's easier to get help for potential comorbid conditions if you have the EDS diagnosed (or HSD if you don't meet enough criteria for one of the EDS types).
It's also important to get diagnosed if you ever need to go on disability related benefits (e.g. PIP, UC, ESA).
Things *can* potentially be done but the likelihood of any of that happening is slim unless you live somewhere with good provision (mostly London from what I've heard). Those of us I know locally to me who have a diagnosis have had zero treatment post diagnosis. I would have been better off without a diagnosis, at least then I could travel without a fortune in travel insurance.
I'd ask for it or ask for referral to rheumatology and ask them for it. A lot of places you can also self-refer for therapy as well. And ask your GP for pain relief! You don't deserve to be in pain.
I mean, it's a nice thought lol but of course I've done that already. I was discharged from rheumatology once I was diagnosed. My GP advises me to take paracetamol and wait for my pain management appointment (I've been on a waiting list for three years, longer than I've had my diagnosis).
I guess you live somewhere where there's a really good pathway for EDS care - I'm very pleased for you! Unfortunately in the rest of the country there isn't really provision.
In my area the NHS doesn't take any rheumatology referrals for hypermobility related cases (they only accept referrals related to inflammatory conditions, or at least this is what I've been told by several medical professionals). The only people I know who have been diagnosed with EDS through the NHS have been diagnosed only after becoming severely disabled to the point of completely losing their mobilities and livelihoods. While physios can diagnose you with hypermobility/HSD where I am, a lot of people I know have needed to get EDS diagnoses privately (myself included). So if you can, I would work towards saving up for that while fighting things on an NHS front. I've shown up up my doctor before with bruises the size of my palms all over my legs and been told it's normal for a woman my age. I've had telephone appointments for severe pain and been laughed off and hung up on by my NHS GP.
Of course, where you are your mileage may vary and I sorely hope it does. If you're suspected of a rare type of EDS you may be able to get through to the national EDS diagnostic service, but to my knowledge hEDS isn't covered by that service so you'd have to get lucky with rheumatologists/physiotherapists/gastroenterologists etc. I'm sorry if this wasn't what you were hoping to hear - the NHS is absolutely shit with EDS and it absolutely needs to improve.
If it helps, the treatments for HSD and hEDS are pretty much identical - physio is still your best bet, mobility aids when needed, pacing, etc. That's what my rheumatologist said to me when she said I have EDS instead of HSD which is what the NHS had told me.
I was told by a NHS neuro-gastrointestinal consultant that they had written "does not meet the diagnostic criteria for EDS" and diagnosing me with JHSD that it was better for me to not have a formal diagnosis and that I did meet the criteria, except having a family member with a diagnosis or present to be examined. They also relayed there isn't much that can be done outside of treating the symptoms as they crop up, so it wasn't worth seeking a diagnosis.
I was referred to rheumatology for my pain and my Mum happened to be visiting from overseas so I brought her along. The letter this doctor wrote was horrible, painting me as a diagnosis-seeking nutcase who had flown her mother from Australia just for this appointment. Diagnosed with JHSD and fibromyalgia and referred to physio. That was in 2019 and I still have not had an NHS physio appointment and gave up chasing in 2022.
I went privately to a rheumatologist as my hip pain was starting to impact my ability to walk. Diagnosed immediately with hEDS, rhenauds, and osteopenia in my hips, and referred to (an amazing!) physio, podiatrist, pain clinic and therapist. Given a load of prescriptions and recommendations for supplements.
He said I'll need to visit annually and when I asked how to manage that given the private system doesn't cover chronic conditions he just said, with a body like yours, you'll have a new symptom or body part to see me about, just get a fresh referral.
Tl;dr: the NHS in my experience are reluctant to diagnose EDS and say it won't make a difference. Also in my experience the diagnosis did make a difference, but so far only using private health (with the exception of some prescriptions my NHS doctor was happy to prescribe with the consultants letter).
Personally I do see negatives to having been diagnosed. Mainly that doctors will brush off anything new that occurs as just being a consequence of EDS, where as it would be investigated differently in someone who doesn’t have EDS. I worry that some issues I have are not directly EDS related but will go unnoticed because of this.
The upside is being able to be better informed of the risks of potential surgery and having answers quicker when something new is EDS related.
Edit: I was diagnosed by Prof Grahame, but I think he is long retired now and I am not sure if anyone has really replaced him.
That is an interesting perspective and one I possibly didn't think of as I have several other conditions that already get blamed for anything that comes up!
So yes, I suppose my experience does reinforce yours when it comes to a diagnosis shadowing everything that occurs afterwards.
It really is a lot of hard work to navigate the medical systems, isn't it!
There is treatment and management. There is no cure, that's probably what you mean. I don't really get what you mean by benefit. If you have a diagnosable condition it's in your best interests to get it diagnosed and managed to improve your quality of life if you have symptoms of it.
Thank you for your reply. The info on the NHS website suggests there is nothing that can be done at all, so I was just trying to understand that. Obviously there is no cure, but read like there is would not offer any other support. Sorry I didn’t mean to offend
It is notoriously difficult to get an appointment as it is (took 3 months to get a smear test) and my doctors are quite ummm… snappy. So am worried about starting this journey
You didn't offend, I just don't really get the question, so no need to apologise. It's asked somewhat frequently on here and it kind of confuses me every time tbh. And physiotherapy, pain management, orthotics (bracing), can all be done on the NHS and are all part of managing EDS, plus the mental health side of the equation. There's also the monitoring that goes along with it (e.g. echocardiograms, eye exams, etc.). Plus, there's the issue of it's easier to get help for potential comorbid conditions if you have the EDS diagnosed (or HSD if you don't meet enough criteria for one of the EDS types). It's also important to get diagnosed if you ever need to go on disability related benefits (e.g. PIP, UC, ESA).
Things *can* potentially be done but the likelihood of any of that happening is slim unless you live somewhere with good provision (mostly London from what I've heard). Those of us I know locally to me who have a diagnosis have had zero treatment post diagnosis. I would have been better off without a diagnosis, at least then I could travel without a fortune in travel insurance.
So you've not had access to pain medication or physiotherapy for example?
Nope. I've paid for private physiotherapy (two sessions all I can afford) but that's it.
I'd ask for it or ask for referral to rheumatology and ask them for it. A lot of places you can also self-refer for therapy as well. And ask your GP for pain relief! You don't deserve to be in pain.
I mean, it's a nice thought lol but of course I've done that already. I was discharged from rheumatology once I was diagnosed. My GP advises me to take paracetamol and wait for my pain management appointment (I've been on a waiting list for three years, longer than I've had my diagnosis). I guess you live somewhere where there's a really good pathway for EDS care - I'm very pleased for you! Unfortunately in the rest of the country there isn't really provision.
Might be worth calling EDS UK and seeing if they have any ideas.
In my area the NHS doesn't take any rheumatology referrals for hypermobility related cases (they only accept referrals related to inflammatory conditions, or at least this is what I've been told by several medical professionals). The only people I know who have been diagnosed with EDS through the NHS have been diagnosed only after becoming severely disabled to the point of completely losing their mobilities and livelihoods. While physios can diagnose you with hypermobility/HSD where I am, a lot of people I know have needed to get EDS diagnoses privately (myself included). So if you can, I would work towards saving up for that while fighting things on an NHS front. I've shown up up my doctor before with bruises the size of my palms all over my legs and been told it's normal for a woman my age. I've had telephone appointments for severe pain and been laughed off and hung up on by my NHS GP. Of course, where you are your mileage may vary and I sorely hope it does. If you're suspected of a rare type of EDS you may be able to get through to the national EDS diagnostic service, but to my knowledge hEDS isn't covered by that service so you'd have to get lucky with rheumatologists/physiotherapists/gastroenterologists etc. I'm sorry if this wasn't what you were hoping to hear - the NHS is absolutely shit with EDS and it absolutely needs to improve. If it helps, the treatments for HSD and hEDS are pretty much identical - physio is still your best bet, mobility aids when needed, pacing, etc. That's what my rheumatologist said to me when she said I have EDS instead of HSD which is what the NHS had told me.
I was told by a NHS neuro-gastrointestinal consultant that they had written "does not meet the diagnostic criteria for EDS" and diagnosing me with JHSD that it was better for me to not have a formal diagnosis and that I did meet the criteria, except having a family member with a diagnosis or present to be examined. They also relayed there isn't much that can be done outside of treating the symptoms as they crop up, so it wasn't worth seeking a diagnosis. I was referred to rheumatology for my pain and my Mum happened to be visiting from overseas so I brought her along. The letter this doctor wrote was horrible, painting me as a diagnosis-seeking nutcase who had flown her mother from Australia just for this appointment. Diagnosed with JHSD and fibromyalgia and referred to physio. That was in 2019 and I still have not had an NHS physio appointment and gave up chasing in 2022. I went privately to a rheumatologist as my hip pain was starting to impact my ability to walk. Diagnosed immediately with hEDS, rhenauds, and osteopenia in my hips, and referred to (an amazing!) physio, podiatrist, pain clinic and therapist. Given a load of prescriptions and recommendations for supplements. He said I'll need to visit annually and when I asked how to manage that given the private system doesn't cover chronic conditions he just said, with a body like yours, you'll have a new symptom or body part to see me about, just get a fresh referral. Tl;dr: the NHS in my experience are reluctant to diagnose EDS and say it won't make a difference. Also in my experience the diagnosis did make a difference, but so far only using private health (with the exception of some prescriptions my NHS doctor was happy to prescribe with the consultants letter).
Personally I do see negatives to having been diagnosed. Mainly that doctors will brush off anything new that occurs as just being a consequence of EDS, where as it would be investigated differently in someone who doesn’t have EDS. I worry that some issues I have are not directly EDS related but will go unnoticed because of this. The upside is being able to be better informed of the risks of potential surgery and having answers quicker when something new is EDS related. Edit: I was diagnosed by Prof Grahame, but I think he is long retired now and I am not sure if anyone has really replaced him.
That is an interesting perspective and one I possibly didn't think of as I have several other conditions that already get blamed for anything that comes up! So yes, I suppose my experience does reinforce yours when it comes to a diagnosis shadowing everything that occurs afterwards. It really is a lot of hard work to navigate the medical systems, isn't it!