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’m sharing this because we find all forms of neurodivergence, including both ADHD and autism and all their “friends” (OCD, SPD, more) to be highly comorbid with the Hypermobilty Spectrum Disorders and EDS. (Or vice versa, since we wish to consider autism a neurotype, not a disease.)
That is to say, people are born autistic with varying presentations. Could they have some comorbidities (including weak immune systems, MCAD and allergies) that lend to some sudden behavioral changes from likely neuroinflammation at times?
Yes. But those aren’t autism, just comorbidities. Remedying those is what’s led some to think there are “cures” for autism. There are not. Just support, which sometimes leads so someone passing as more neurotypical. We are… born this way, baby!
Here is what The Ehlers-Danlos Society is advising for what it’s worth. (Mostly WHO guidelines without specificity to EDS.) I do hope to produce a post with some more thoughts of my own quite soon. I just keep stepping in alligators!
Update 3/12/20: I’m keeping this next bit up a while longer, as I was also so late getting to it that I feel it got short shrift and deserves more attention also, even though Black History month is past:
If I think I had trouble getting diagnosed as a petite white woman, being black or a person of any other color in the US at least makes that journey even harder for many historical reasons. I’m so glad she shared her journey too. We truly need more BIPOC representation in the EDS and MCAD space.
That said, the very similar looking Marfan Syndrome is still considered rare at about 1 in 5000 worldwide, and is highlighted this month also. Many with EDS have marfanoid features and “habitus” or body style/shape, but… they may still test negative for Marfan syndrome, which involves a defect in fibrillin, rather than collagen production as in EDS.
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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