And maybe that’s why you’re tired too! Join me on a journey of discovery about one of the most poorly recognized and unbelievably tangled health webs you can find involving not just one, but several intertwinedsystemic conditions I personally unofficially call the “Chronic Constellation” for lack of a better name.
Each syndrome alone is enough to take a person down at the knees, but combined as we so often find these, they can be downright show stopping, if not even lethal sometimes, sadly. Oh, That’s Why I’m so Tired!
I’ve just come to learn that July is now known as Disability Pride Month, in which disabled people celebrate their lives – as equal to, even if different from – the majority. And highlight and root out ableism in its many forms and guises. What is ableism?
“Ableism is the discrimination of and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted in the assumption that disabled people require ‘fixing’ and defines people by their disability. Like racism and sexism, ableism classifies entire groups of people as ‘less than,’ and includes harmful stereotypes, misconceptions, and generalizations of people with disabilities.”
Disabled people – including many EDS and MCAS patients (though not all) as well as many (not all) autistics – are not less than or broken. Nor are all disabilities visible.
Can you “see” my internal pain or sensory sensitivity? Can you tell your bright headlights or banging music or loud motor are causing me pain? Can you tell if someone is depressed or struggling to parse what you just verbalized so quickly without waiting for them to catch up? Or did you just go steamrolling on, cuz… this isn’t visible?
Please start seeing us (everyone) as a peer, no matter what age or disability (even intellectual disabilities) and listening better. Try not to infantilize or patronize us. See us a people first, even if you may have to wait a beat or three to get our answers back. It will be worth it. Thank you!
2020 Global EDS Learning Conference is going virtual this year due to COVID-19
The International Ehlers-Danlos Society’s Virtual Summer Conference is starting Friday July 10th, 2020, ending Sunday July 12th. This will be entirely online due to the global COVID-19 pandemic this year. The cost is much reduced accordingly. This is a great opp to learn all the latest information and thinking about these connective tissue disorders for both doctors and patients.
Please take care not to “whale watch”, that is, go leaping from one highly touted solution to another. “Oh look, a solution over here!” “Oh hey, there’s another one over there! Ooh!” leading to wildly careening about the boat.
We are all desperate for answers and “cures” but this is how snake-oil salesman make their livings. Pause, and gather data. And consult YOUR doctors and practitioners first. And listen to your own bodies. Always. There are no panaceas, sorry.
OLD NEWS:10/8/19 My kingdom for a comma! Yes singer Sia has Ehlers-Danlos Syndrome! No, it is NOT a neurological disease as the media mistook her first October 4th tweet to read! (Look closely, there’s an Oxford comma there!) See her next tweet of October 6th clarifying this, but not before not only The Daily Mail and CNN but even WebMD *mistweeted* that EDS was “a neurological condition”, eek!
DO YOUR DUE DILIGENCE PEOPLE! Take just 30 seconds to Google or otherwise research something before spreading misinformation!! And you wonder why we’re so tired! 😉 Onward…
Good news,Project EDS ECHO for doctors was rolled out in May 2019, and is officially underway. This should really help to “infect” more doctors with the latest information and insight into the forms of Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders, so patients don’t have to do all the heavy lifting anymore! It’s found here: http://ehlers-danlos.com/echo .
So far 150 doctors have signed on and earned CME’s for participating, thank you! The Ehlers-Danlos Society hopes to reach 1000 practitioners by 2020. (New “sessions” roll out periodically.) Help us reach that goal by sharing it with all your doctors! (Along with the EDS Toolkit for doctors freely available here too.)
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Update March 2018 – The non-specialist LAY versions of those 18 crunchy papers above are HERE now too for the win! Big thanks to The Ehlers-Danlos Society for writing these up for the rest of us who don’t speak medicalese, or whose brains are just too tired to parse it. I think even some doctors will appreciate them too! And…
Update May 2018 –The Royal College of General Practitioners in London, England just successfully rolled out a brand new, brilliant “EDS Toolkit“ online for their GPs (and other allied healthcare professionals) to learn and study from! And I got to help draft it at the invitation of the primary author, Dr. Emma Reinhold, a GP with hEDS and MCAS herself I met on Twitter along with some other much esteemed company.
I’m very pleased to have played even a small part in “midwifing” this project along. Please share it far and wide with any and all doctors you can! It is freely available to anyone and everyone on the web, not just the NHS.
The International 2017 EDS Classification via The Ehlers-Danlos Society
You might wish to refer to this FAQ document previously shared by The Ehlers-Danlos Society for clarification on the new criteria and terminology update as well. We will now be referring to EDS in the plural as the “Ehlers-Danlos syndromes” with an “s” on the end. (Or trying.)
As well as diagnosing an entirely new category of severalHypermobility Spectrum Disordersfor those who look a lot like they have EDS, suffer much the same, but don’t meet the criteria for any more specific diagnoses involving hypermobility of varying degrees yet.
I.e, they are subclinical for hEDS as I was for my first 44 years, and may now be technically again since I stiffened so much with age and arthritis. Kind of like how Pluto was re-classified to a dwarf planet 10 years ago right? It never changed a spot. We just changed our minds about it.
These forms of HSD also all supplant and replace the former diagnoses of Hypermobility Syndrome, Joint Hypermobility Syndrome, and Benign Joint Hypermobility Syndrome to my understanding. I like to think of the HSDs as the less visible bulk of patients “below the water line” as shown here:
The criteria for what has been called hypermobile EDS or hEDS were just tightened in 2017, so I will no longer refer to this form as common anymore accordingly. I actually no longer meet the new criteria since it requires a much higher Beighton 9 pt score than before. I now fit one of the forms of the new catch-all bin of the Hypermobility Spectrum Disorders better even though I was extremely bendy as a child, but…
NB you do NOT need to “lose” your diagnosis of hEDS until/unless someone requires you to, such as to meet the criteria for a research study. Further, you will still have a diagnosis that represents a hypermobile disorder, but just with a different name. It is hoped this will lead to speedier presumptive care and management rather than just leaving patients suffering because they did not meet the new higher bar of hEDS diagnosis.
I, Jan, unscientifically personally now feel very strongly that the newly recognizedHypermobility Spectrum Disorders as such are NOT rare at all, but also just rarely diagnosed – and not just because they are newly introduced. But because they’ve always been dismissed as “normal” or early aging, or “just depression”, fibromyalgia, chronic fatigue or hypochondria under any name/classification scheme when they should not be!
It is my deepest wish that one day, this disease cluster will be as well known as multiple sclerosis, and much more quickly recognized. Everyone knows someone with a hypermobility spectrum disorder, if not even EDS. I will continue to post and tweet to that end, while I finish writing my book. Join me.
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