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've signed , I have a lot of HEDS markers which the rheumatologist agreed on the new checklist although he said it's a possible diagnosis there is no genetic test as yet . Luckily I am under the care of a gastroenterologist and gynecologist for those problems and stanmore are doing a spinal fusion in November.
Gps should be more aware and rheumatologists dont seem to know what to do.
This is it...we need to collaborate with EDS-expert professionals who understand our other comorbidities & are prepared for multidiscipline liaison...medics of all types from GPs to physios to rheumies to gastros to neuros & on & on
Am glad you’ve found clinicians who are really trying to help!
My type of EDS is only hEDS and i’m lucky to have found a way to get expert care during 6 decades of coping with this affecting every part of my bod including my eyes, eg:
-My hEDS-related my lumbosacral scoliosis finally got bad enough to qualify me for an instrumented lumbar fusion, which neurosurgery performed in June
-My v early onset AID+PID+EDS-related slow transit dysmotility + intestinal insufficiency & visceral hyperreactivity finally segued into intestinal failure approx 6 years ago...i’ve been fully unable to digest anything for at least 2 years now and am in my 19th month on exclusive Enteral Elemental (pre-digested amino acids) nutrition doing my best to prevent this failing because the next stage is parenteral (tube etc) feeding + ileostomy which are ultra risky for me because i have a v early onset CVID type of Primary Immunodeficiency simultaneous with infant onset SLE
But, even with the most immune dysfunction & connective tissue disorder aware collection of medics i’ve ever managed to accumulate, my life has been & still is a constant struggle...eg the neurosurg’s OR team did a good job in june, but the team on neurosurgery ward screwed up: the resulting post-op opiate induced bowel obstruction (a risk slow transit hEDS patients especially face) has brought me that spooky bit closer to needing tube feeding & ileostomy. All characteristic of severely effected hEDS patients cared for by the Feeding Issues Multidisciplinary Team at my Univ Hosp - i’m glad to know this FIMDT is there for me when i need it...but we’re determined to postpone this need as long as poss due to my PID high infection risk
Thanks for your reply, megnstan! Apologies for the long response...sorta jumped on my soapbox cause i identify with you & i feel quite a lot of us are managing overlapping immune dysfunction + connective tissue disorder conditions which need wider recognition & understanding....and petitions like this one can help
I’m v glad that 1 of the WONDERFUL ways Lupus UK helps us is by acknowledging our tendency to overlapping comorbidities and not hesitating to support our efforts to understand our Lupus & Lupus-like conditions as well as conditions these are associated with, eg Sjogrens, vasculitis, APS, raynauds & erythromelalgia, EDS etc etc
🙃😍👋👋👋👋 OMG could i never be coping even as ok as i do without your coaching & the solidarity of EVERYONE here: 🤩 you are THE BEST ...even with my TRULY pos response to ALL my multidiscipline combined therapy meds, it’s a decade learning from 🌟🌟🌟🌟🌟🌟 folk like you here & on my PID + EDS forums that means i manage as well as i do
🤗 Thanks so much, but, you know: it’s been several years since i could be active here...from 2011 i was trying to be active here every day come what may, doing as much as i could to be useful + to learning as much as i could...but the past 6 years after my 60th have been harder on me in many ways so i’ve gradually had to reduce my activity here...and concentrate on learning from everyone here 👏👏👏👏💐💐💐💐
🤷🏼♀️ It is what it is: don’t many of us slow down as the simple realities of ageing combine with the progressive multisystem damage our combo of AID/CTD etc has caused...we each manage this in our own way...and the earlier the onset of our illnesses, the sooner we may find this need to slow down sets in...that’s life 🤗
Yes, absolutely. You are the veteran and of course everything becomes more laborious as the years pile on.
I too have felt this in the past year or so. To leave the house 🏡 now means I’ve saved enough 🥄 🥄 to get out, achieve and return with just enough to stumble through until 🛌!
You , dearest Coco, have contributed more than enough to be able to take a backseat and be the expert, honoured guest when occasions arise.
We collectively applaud and praise you for all the you have contributed over the many many years. 🌼💐🌼😘
AWWW: 😍 THANKS ...and here i am, none of the younger generations around me that you give your time and care to so ❤️ generously 👏👏👏👏...i guess we all do what we can, when we can, where we can and to who we can 🤗🥰
Thinking of you as always and wondering how your multiple medical meetings went. Especially your postsurgical evaluation. With all you have to face, you are so generous to others! ❤👏👏❤🌺🌺🌿🌿
😍 Thanks ...🤦🏼♀️ sorry am so v slow to get back to you...glad you remanded me: will message you this week - the first week since the review when there isn’t stuff getting in the way! Am feeling aged: years older than before the op in june...even so, definitely NO REGRETS re the op! 🥂🍾 💐❤️🍀
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