Inquiry into treatment of Ehlers Danlos patients and its comorbidities
Ehlers-Danlos Syndromes (EDS) are part of a group of connective tissue disorders, of which there are 13 types. The most common type is hEDS, otherwise known as hypermobile Ehlers-Danlos Syndrome. This syndrome is at the top end of a spectrum called Hypermobility Spectrum Disorder (HSD).
After being contacted by many EDS patients with tragic stories, we are calling for an independent enquiry into the treatment of EDS patients and associated comorbidities. Patients can be accused of fabricating illness and are treated as a psychiatric patient (much like fibromyalgia). For example, Antonia was an inpatient as a teen and had stays up to 3 years, including ICU. Doctors seemed unaware of EDS thus provided poor care. It appears to be common for most EDS patients. Something needs to change...this petition can try to help:
I assume it's better for those of us who are not UK citizens to not sign this? I don't want to invalidate your work. Otherwise I'll sign in a heartbeat obviously! 💖💖💖💖
Hi coco. Thanks for putting this on. I hadn't come across it and will certainly sign it.
Despite the efforts to educate GP's and inform other medics so much more needs to change. It is still so difficult for anyone pre-diagnosis, as well as it being a constant battle afterwards to get the help we need.
Hoping you're as ok as can be. Sending love❤😘 xxxx
Bless you❤ I can relate to getting older, in 50's but feeling 80's😕 and it only adds to the challenges of this thing. But we keep creaking on as best as we can. I hope your bumbling goes smoothly enough😘 xxx
This aspect is important.
It would be useful to add some examples to the petition.
The petition hardly says anything (?)Or
Am I missing something?
I believe EDS is still seen as "mystery condition".
Some say it's an acquired subclass RA.
The mainstream says it's genetic NOT autoimmune.
Well, everything is "Genetic" in origin,
if you think about it.
These are connected / intertwined!
In the USA, they seem to have experts that
know EDS stuff that is extremely important and
crucial as we grow much older.
Research in the UK seems to be more bio-mechanical
issues, functional gut etc, (useful but I have seen enough of that
campaign.), but not enough in other subjects
and not in the right direction at this juncture.
Awareness needs to shift as needed.
If there are enough "serious" stuff being researched
Something does need to change in the UK, very much so. I have signed and shared.
The situation seems to me to be this. Once diagnosed you'd best hope you don't deteriorate as there is no support at all. Specialist services deal with new referrals only and it seems this "new" hypermobility clinic is private, what a kick in the b****cks for us! I bet my CCG won't find a trip there for me. Best to hope also your spine or neurology is not involved as the very obvious things to check are not checked, the upright MRI / CAT scans are not offered because the prone MRIs show nothing even though everyone concerned knows they won't! Forcing you to live in limbo or pay to get the answers. I've seen so many UK patients raising money to go abroad for neck ops, lifesaving treatment the NHS will not fund- its sick in my opinion. If people just left an animal to suffer they'd be called cruel but this is the choice people have been left with of they can't fundraise or don't have someone who can pay. Its just so wrong but given the politics of the last 9 years its sadly not surprising. Most areas don't even have decent NHS physios now (the self refer service say my neck is too complex for them... Gee thanks) so I've been muddling along doing my own physio. Muddling along researching supplaments to help with musculoskeletal and GI symptoms, nausea is a constant state, so is being tired. My life is...I don't go out (can't workout help), travel causes extreme pain, Using phones/ tablets is done briefly and with caution, I have constant muscle spasms (even with baclofen, electrolytes and magnesium), feel stuck y noisy of the time, can't do bright light/ noise or people to be honest. The benefits system is a nightmare and to be honest after 10 years of pushing but getting the "you've got your label, now eff off" attitude, one is starting to get quite peeved... Lucky for me the hyperactivity seems to keep any mental health issue at bay, and yes, I do think it's lucky.
This is just a drop in the ocean, I am just a drop in the ocean. I don't want sympathy, I want ALL EDS and HSD patients to get lifelong help if they need it. I am not a poster of sharer of my life online but this rant of mine was long overdue as is and end to the poor treatment were get at all stages of our condition.
How so deeply sad that is, but likely, it's the hard reality of this genetic condition many of us do face.
What does bother me is that my middle-age year is quickly running out. I'm not sure how old you are, but yes, you are right, EDS is still a "mystery disease" often explained by functional cause i.e. histeria. I never met Prof Aziz but he has been advocating functional GI problems in EDS. I am not sure about his current position in this.
However, this "trend" has been ongoing for many years as far as I am aware. It's all psychiatric or psych-related disorder whilst there's "nothing absolutely wrong with you". So medics gather it's all "functional" garbage we Collectively suffer from. WRONG!
I would soon be put on "senior year" category. I did say to Lupus UK in the past that you/the Charity giving an impression that patients are all young and looking glamorous represented in their Lupus UK pamphlets. Some of us are much older, well beyond "younger categories", let's say, up to about late 40s/mid-50s? I guess the Charity needs to use the image of "attractive young women" on their promotional leaflets. Or someone younger and someone who has his or her future ahead. I think it's ageism. Age bias.
Knowing how collagen works and stops working in normal ageing. EDS Patients, who are much older are A LOT WORSE OFF. Yes, I say, this condition is not static. Some medics say it is progressive. I would not doubt about that. Do they care about us older folks living with EDS? Not quite sure, to be honest.
My summary is, "being vague never helps in medicine". I mean about
"EDS" the name derived from a French Rhemy, discovering this condition. It's still shrouded by the clouds of functional disease.
I often think some "powerful punchline" is still missing. The true core of this condition. We don't even know what it IS. Other specific genetic conditions do share connective tissue aspects, but these conditions are specific. But EDS is largely unnamed and it's a mixed bag of genetic diseases/conditions. Reality is far more complex than "oh it's EDS, you know?" Well, nobody knows what it is!
I also think, that they/doctors also need to stop making up more "classification/EDS types" OCDs adding this or that. Their interest needs to focus on patient care and management on this chronic disease/condition. We have enough "types" already. I'm sure some "EDS" docs are well aware of that, too. Funds not reaching the bottom of the service level where patients are.
Also, the query of VEDS being the sole major risk as if others don't count much at all. Whilst VEDs are serious, other EDS types are seen as "likely bogus/functional" garbage we can forget about. Well, does that help us? Far from it!
Also, I am very concerned that private EDS doctors making a huge sum of money out of desperate EDS patients. This has to be looked at potentially being highly exploitative and for their commercial interest. It's not nice. NHS need to pour more funding. Many older, poor patients would be left abandoned without any sort of consisent medical care.
What amazes me is that nobody seems to be shocked by EDS-ers spending their lifesavings only to get some medical attention. Remember, not many of us are so lucky. It's a sad situation over all, but it is hardly surprising why patients are treated badly. All the medical journals and papers do STATE that most of what EDS patients suffer are BENIGN and FUNCTIONAL (not REAL).
If the medical communities support us, take our condition far more seriously, the rest will follow. I rarely comment that I have a diagnosis of EDS. I don't want to give an impression that I have got this fancy functional condition that medics believe that it's purely psychiatric.
Patients need to be far more vocal and demand what they need, too. NHS should do more. WheelyBad is right.
To outline as much as poss without an essay I'm in my 40s, diagnosed at 27,. Hyperactive since a baby which has shaped the way I think. Had physically active life even though I used crutches and a chair for more than a few steps due to loss of disc material L2 to L4 and a S1 bulge and chronic muscle spasms and tremour. To cut a hugely long story short...At 31/ 32 I started getting much worse, more pain, lost strength and movement in right arm, developed a scoliosis type lean and neuro symptoms a year later. That was in 2010. I have theories but given the lack of help I received I've been in limbo since. Every time I tried to get help/ answers I've been fobbed off with excuses. They know I've been on meds for muscle spasms since my teens which gives you 2 possibilities right there and they know given my sports background de conditioning was not the cause. After desperate research I've tried to get CCI checked out but NHS staff pretend the condition does not exists. There's also been a direct correlation between the cuts in NHS funding and the help I can get locally or nationally. I've spent 9 years for the most part stuck at home and for 6 of those years I struggled to do the hobbies I took up to replace the work/ hobbies I had to quit in 2010 (which replaced hobbies I had to quit years before that). All my life I've adapted, I've changed to do what's best for me, to stay well, active and healthy. I've looked after myself to a textbook degree but I feel I'm getting little help when I've done most of the looking after on my own anyway. Now I'm really desperate, with very recent deterioration for the first time in years the only exercises I'm doing are Range of motion based and there seems no where to turn other than paying. Won't be depressed as being hyper I get bored of it and I also won't give the f*****s the satisfaction. Using web brings on neuro symptoms and on the days It don't it cause fatigue so excuse lack of decent grammar etc but had to be quick. Dictate and speed edit lol Will check back when poss so take care everyone.
Am greatly feeling for you & relating to your wonderful but also very sad & dismaying testimonial:
am 66 with familial hEDS + DES Syndrome + infant onset systemic lupus (SLE) & primary immunodeficiency disease (the PID panhypogammaglobulinaemia).
My lupus was diagnosed in the usa in the 1960s when i was a toddler, but my parents & medics never told me. My DES Syndrome internal birth defects were recognised in the 1970s when the international DES scandal hit global headlines just before i moved to the UK permanently at 21.
The NHS took almost 40 years to figure out that SLE + PID + DES + hEDS are the primary causes underlying my lifetime of health emergencies + progressive multisystem debilitation & secondary autoimmune diagnoses (sjogrens , lichen sclerosis etc etc). Once the NHS got this straight, i was in my 50s ...then my care & treatment began to improve a lot and i’m responding positively to all my multisystem treatment plans.
Throughout those 40 years in the diagnostic wilderness, i concentrated on being as conscientious about lifestyle management + complementary medicine as someone so generally unwell due to very early onset incurable, progressively debilitating systemic illness can be. When the nhs finally DID figure out my primary conditions, my brilliant consultants & physios & co all said that without my self help i’d have even more multisystem debilitation...go figure
Am wishing you & everyone here on this wonderful forum : courage + every best wish 🍀❤️🍀❤️🍀❤️
PS in case someone is curious about DES Syndrome, here is a link to official info...my lead medics think it was the DES exposure that tipped my genetic predisopisitiin to connective tissue disorder + immune dysfunction over into all these primary illnesses. Diethylstilbestrol (DES) is an endocrine disruption artificial oestrogen that was prescribed to pregnant women approx the same time thalidomide was. DES is called the “hidden thalidomide”:
It gets exhausting constantly fighting and pushing, doesn't it?! The whole system has certainly left me feeling frustrated. At times I've felt judged, ignored, shamed or all three. After diagnosis I (naively) thought that wouldn't happen again but the past 9-10 years it's been just like that all over again. I dread to think what state I'd be in if I didn't try to help myself.
I try my best at self care. However judged I feel at the end of the day only I can be the real judge, do all my own physio as well as try to do a little cardio or resistance training, a little is better than nothing even if I'm stuck in bed! 3 minutes with a floor cycle may sound like eff all but it is a big deal some days so I do what I can when I can as much as I can in that moment and no more. Also try throw in a bit of Pilates for good measure. I don't beat myself up if I only do 2 minutes but I celebrate the days I hit 20 minutes in a day as it must be paced and balanced with coping with daily life. I take loads of supplements, magnesium for spasms, electrolytes for spasms and neuro, vit C to help the collagen, vit B complex for MH support and fatigue, prescribed vit D and calcium as I was deficient, inositol (recommended in some circles for PCOS), probiotics, prebiotics and digestive enzymes, super strength omega 3 and to support my efforts at weight loss/ not putting any on, CLA plus at various times for illness Echinacea, cranberry extract for water infections (phew! What a list!) I'm on a ,"mostly vegan" diet, meat is a treat we have once or twice a week. No sweets, biscuits, pies or pastries unless skinny and very occasional (my guts can't cope with fats). Milk free chocolate is thankfully hard to come by so again a serious treat. I wouldn't dream of letting myself go, mum and grandad diabetic and my dad has high cholesterol so I know I got to be careful.
With my food and exercise regime it's the one and only thing in my life I can control, I have to adapt during injury and flare ups but there are things I can't do myself, like now, like how it's changed. I know when I first reported bi lateral weakness the rheumy said my weak arm strength was normal. She wouldn't accept that it wasn't normal for me when 18 months previously I'd been chucking shot puts and discus around with it! My fitness did not work in my favour then at all and I know that had I stopped all activities I would've been told it was my fault for stopping being active!!! Despite that kind of worry I won't stop, got enough health issues just with EDS and co morbidities.
Barnclown you give me hope that one day someone will have some answers for me!
You are truly inspirational...your self awareness & understanding of the whole situation re diagnosis & management & treatment is MUCH greater than mine was before my stuff finally began to be figured out just over 10 years ago. Am glad if anything about my version of this can be useful. Thank you for every detail, cause they are all useful to me: even when things are going as relatively positively as they tend to be for me now, am all to aware that this can easily change due to NHS policies, protocols, staffing changes etc etc...i never feel ‘secure’. Hope you give yourself FULL CREDIT for what you’re achieving re self help! ❤️🍀❤️🍀❤️🍀
Thanks Barnclown 😄 that means a lot, neck being a b***h today so you've really given me a boost. Vision blurry today so not stopping. Big hugs to all the beautifully rare xxx
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