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!
… LGBTQ Pride Month 2021 for the win! We find members of both groups fairly well represented in the EDS/HSD community too, or I wouldn’t be mentioning them.
Lipedema is a painful fat storage disease, causing almost intractable (unavoidable) weight gain and mistaken for general obesity until people catch on to this being the cause. Some have benefited from a special keto diet, as opposed to the overall generic caloric restriction usually prescribed for obesity. (Patients may also be somewhat obese, which will respond to this, but won’t touch the lipedema.)
It is characterized by heavier weight in the bottom half of the body in general, often with “trunk-like” leg shape (though arms and upper body can be affected too), and primarily in women. Most will also have painful fatty lumps palpable underneath the skin, and more advanced cases will exhibit “cuffing” of the fat around the ankles and wrists. As well as secondary bilateral lymphedema in the worst cases.
Sadly almost no doctors in the US have heard of it, though it affects as many as 1 in 10 women. And fewer yet know what to do about it even if they have heard of or recognize it. The few doctors who do are totally slammed and booked out for years now, as word has spread on social media and the internet. Thankfully the patient community have taken matters into their own hands, offering support groups and coaching for those who manage to find their way to this answer.
Combine this with a hypermobile body underneath? And yeah, people will have trouble walking and moving around with this!
Then for as yet even more unknown reasons, I’ve found a relatively high proportion of the EDS/HSD community to be LGBTQ+ as well. Ditto in the autistic community (where too many are dismissed by their overfunctioning parents). Why this whole package of issues and challenges goes together so much I have no idea. But we are the definition of intersectionality, that’s for sure!
Parents, please please believe and support and love your kids, who and however they turn out to be, and especially if they are autistic. I promise you no one chooses this path for shits and giggles (fun). It’s way too fraught with bigotry and misunderstanding to be elective. This is why I also mentioned Pride Month 2021.
COVID-19 Emerging worldwide March 2020
(And continuing in March 2021, sigh… are we there yet? No? Waaah.)
I was late getting to this update back in March2020 thanks to both the outbreak of the newly recognized Coronavirus causing a pandemic of COVID-19 around the world. [Edited 8/11/20 to add past tense]
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.
And, as of 8/11/20, per this article, it appears your home made cotton masks DO work folks – so keep wearing them if you can. It’s helping.
Yes, both Sia and Jameela Jamil have EDS, among others. ‘Nuff said.
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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