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Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Diseases (MCD) and Dysautonomia –  Oh! That’s Why I‘m So Tired!! 

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Twisted!

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 intertwined systemic conditions I personally unofficially call the “Chronic Constellation” for lack of a better name.

Find Emergency Information and “Cliffs Notes” for Doctors Here <–

(Including a bonus dental freezing / numbing formula that’s tailored to EDS patients.)

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!!

Yet barely 10% or so who have this “trifecta” of a form of Hypermobility Spectrum Disorder or Ehlers-Danlos Syndrome, MCD (any type)and Dysautonomia (usually POTS) plus many variations and additional issues including autism and weak immune systems get properly diagnosed, and it takes 10 years on average to get diagnosed with a form of Ehlers-Danlos Syndrome. (It took me over 25!)

Most are currently getting diagnosed with arthritis, Fibromyalgia or ME/CFS, depression and anxiety if anything at all. This site is my attempt to help remedy that for everyone – both patients AND doctors!

Besides my standard pages in the menu above, you might like these Selected Posts and FAQs to start too. They feature my best, most popular posts that are not linked in the menu but are also helpful.

Hypermobility Spectrum Disorders and EDS aren’t rare, they’re rarely diagnosed!

Last updated February 3, 2024


News and Events


February is Rare Disease Awareness Month

And as I’ve said many times before and elsewhere on this blog, I do not think the collection of all forms of the Ehlers-Danlos syndromes (EDS) is at all rare, any more. Even if you subtracted the most common “garden” variety, hypermobile EDS, aka hEDS (and the newly defined Hypermobility Spectrum Disorders since 2017), for which we have no single genetic marker. (Unlike all the rare types, which do all have genetic markers now.) I still don’t think the remaining collection of forms of EDS is all that rare. Just rarely diagnosed. Truly.

Seriously. The more I serve the houseless in my local area (Portland, Oregon), the more I see signs of EDS and autism and ADHD out there. But folks are just too busy trying to just survive outside to be able to catch their breath, and recognize a systemic condition or three. (Though they quickly do any time I nutshell it for them.) And because the vast majority do street drugs to cope with their pain of all kinds (mental and physical and emotional), their doctors “treat ’em and street ’em” as fast as possible. Truly. (This explains one of my prior doctors’ behavior I now realize. She thought I was drug seeking and she treated me like absolute shit. Needless to say I switched doctors.)

Again, most get diagnosed with just depression, anxiety and the still poorly defined “fibromyalgia”, if anything. Or for one of our very many annoying and outright painful co-occurring conditions.

So few doctors connect the dots, and see the whole person in front of them, and recognize a more systemic issue going on. I don’t know why this is so hard. I saw it immediately once I learned about EDS in 2011. Boom. The penny dropped, and I had answers for my whole entire life experience. (Or most of it- MCAS, dysautonomia, autism and ADHD entered the chat a bit later as most of you know.) I could then see it easily in many friends and others. And still do.

But most deny it, or have never heard of it, or don’t want to. Like most of our doctors, they focus in on one or two issues, but fail to pull back and see the bigger systemic picture. Or, wrongly ascribe all their issues to any co-occurring autoimmune diseases if they have any. (And most do. It’s common in trauma victims.)

Anyway, I really don’t like calling EDS rare, but the bigger voices/charities do still, so… here we are. But… it is also Median Arcuate Ligament Syndrome or “MALS” Awareness month, and Marfan Syndrome Awareness month. And the former co-occurring condition is often missed for literally years, and is also not that rare, just rarely diagnosed.

(From the website above: “Median Arcuate Ligament Syndrome (MALS) is a congenital anatomical anomaly that occurs in 15-34% of the population. It is caused by the median arcuate ligament compressing the celiac artery and the nerves of the celiac plexus, causing symptoms such as pain after eating, nausea, exercise intolerance, weight loss, and more.“)

And many who have Marfan Syndrome are misdiagnosed with EDS and vice versa. It is another connective tissue disorder that involves faulty fibrillin, not collagen. But results in very similar issues to EDS. Be sure to do proper differential diagnosis. (Tell the two apart, and diagnose Marfan if needed.)

Some common tell tale signs include: dislocated eye lenses (or lenses that move a lot), and congenital heart defects and aortic enlargement and aneurysms.

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I sometimes feel like I’m just collecting diagnoses on this site. But I truly couldn’t make this stuff up if I wasn’t witness to them all in massive online groups (60,000 in one, almost 100K in another now, no joke, and plenty on Twitter) and in real life every day.

That’s why I called the whole kielbasa (collection) The Chronic Constellation here back in 2016, for lack of a better name. I “see” more patients than most doctors do, just socially, but with the advantage of more time and less pressure so we can share more than is often allowed in the doctor’s office. That’s why I’m sharing so much here – to give all you doctors a leg up!

***

I use the space above on my home page to highlight some of our more common comorbidities – aka co-occurring conditions every month. We have many, so you will see many through the year!

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January 2023: I am now also on Mastodon via the Disabled.social server as @ohtwist since #Twexit began in earnest October 2022. (I remain on Twitter still too though.) Bear with me as I try to keep all these plates spinning while disabled and living alone in pain thanks. (It’s a lot! Including Facebook, too.)

Good News! As of late January 2022 followers will be pleased to learn that the EDS Toolkit for Doctors formerly hosted by the Royal College of General Practitioners in London since 2018 has indeed been saved and is now hosted by Ehlers-Danlos UK here:

https://gptoolkit.ehlers-danlos.org <—NB that’s “dot org” at the end, not “dot com”, which would bring up TEDS, an entirely different organization.

“Development of this toolkit in 2018 was led by Dr Emma Reinhold, with contributions from pharmacist Lisa Jamieson MSc, Prof. Lesley Kavi, Dr Hanadi Kazkaz, Dr Alan Hakim, Nikki Paiba, Dr Gemma Pearce, Dr Philip Bull and Jan Groh. The toolkit was hosted by the RCGP between May 2018 and November 2021.”

EDS In the News:

Woman accused of faking symptoms of debilitating illness dies aged 33 via Independent UK September 5, 2023 (How a young Auckland support group leader was gaslit about her very serious EDS and POTS symptoms and ultimately died much too young.)

Doctors missed my debilitating condition for 20 years – I diagnosed myself after watching a TikTok May 25, 2023 Metro News UK

Folate-Dependent Hypermobility: Researchers at Tulane’s EDS Clinic Look Into New Possible Mechanism For Hypermobile EDS May 2023 via EDS Awareness (a more sober take than put out by PNN last month)

‘Written off’ – call for more help to get millions of long-term sick back into employment (featuring an English woman with EDS) via Sky News March 2023

Ramon S. Barthelemy talks about coming out “again” with his hEDS via the Salt Lake Tribune, March 2023

Billie Eilish: Singer says ‘I feel like my body was gaslighting me for years’ January 4, 2023 via Sky News

CNN once again highlights Ehlers-Danlos in an article from a writer whose daughter has EDS asking: “Why isn’t the medical profession paying more attention?” December 2022

Jameela Jamil Shared She Has Ehlers-Danlos Syndrome. Here Are The Symptoms Of The Rare Condition via Buzz Feed news December 2022

Revenge of the gaslit patients: Now, as scientists, they’re tackling Ehlers-Danlos syndromes Dec 12, 2022 by Isabella Cueto via STAT News

EDS Awareness aka Chronic Pain Partners featured Guinness World Record holding para climber Anoushé Housain in their December 2022 Newsletter.

The Ehlers-Danlos syndromes, Fibro, MCAS and dysautonomia are finally recognized to possibly be behind or go with some cases of ME/CFS in this article in The Atlantic about Long COVID September 2022 (Ed Yong)

Marvel’s New Spiderverse Hero Shows the Struggle of a Real Disease – September 2022 via Screenrant (Follow Sunspider’s creator who has EDS on Twitter at @MizTeeFranklin.)

Two medical doctors share What a lifetime of gaslighting by other doctors feels like via KevinMD June 2022

Halsey reveals new health diagnoses after hospital stints: ‘I’m still looking for answers’ – Hannah Yasharoff via USA Today May 10, 2022

Phoenix’s Fox 10 covers EDS patient and research scientist Dr. Cortney Gensemer’s story at MUSC April 2022

In which the Washington Post gets EDS mostly right for a change in this nice writeup on fellow patient Dr. Zingman’s journey December 2021

As well as The Guardian here, in February 2022

Via CNN travel edition January 2022: Another patient uncovered her EDS and MCAS after a spinal fluid leak derailed her life in 2017

The Emergence of COVID-19 Worldwide in 2020

COVID-19 emerged on the world stage in early 2020, and is continuing well into 2023 now as you all know. We’re just letting it rip now, in February 2023, much to our chagrin as often immunocompromised patients, vaccinated or not. After a minor summer dip, numbers are cratering back up as of September 2023 as school goes back in session in the northern hemisphere at least.

The actual death rate may be down now thanks to vaccinations, but… many of us are still having to lead isolated lives still shielding due to our fragile health and primary immunodeficiencies many have. We humbly ask you to wear a mask if you can in any crowded public spaces for our sakes, thank you. (They do help.)

Here is what The Ehlers-Danlos Society advised in 2020 for what it’s worth. (Mostly WHO guidelines without specificity to EDS.)

A couple of other articles of interest to our community in particular:

January 2023: I’m now planning to start a COVID Resources page as well now, as the EDS/HSD community seems to be disproportionately impacted by Long COVID, with significant overlap with the ME/CFS community. (Who are finding increasing overlap with the world of connective tissue disorders, hypermobile or not.) Stay tuned. (It will be under my resources tab, once born.)

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” so to speak. For COVID or any other condition.

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 help some, so keep wearing them if you have nothing else. It’s helping.

ETA 1/3/23: I now highly recommend a KN95 mask if possible though for better security against Omicron, XBB.1.5 et al. But, any mask will still help reduce your viral load, truly. So whatever you have will still help.

Ongoing news

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 over 1000 doctors have signed on and earned CME’s for participating, thank you! (As of 2022.) The Ehlers-Danlos Society hopes to reach as many as possible every year. (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.)

EDS in Celebrities

Yes, I know that Sia, Jameela Jamil, Halsey and Lena Dunham all have EDS, among others. Apparently including the late Elvis Presley per this post in 2021. I’ve long suspected he and the late Prince, David Bowie, Marylin Monroe and Michael Jackson myself. (I think MJ was confirmed somewhere?) ETA: Billie Eilish spoke up too via Sky News in January 2023.

Hypermobility lends to great vocal ranges and agility, dancing ability, and… chronic pain after all. I wouldn’t be surprised if we continue to slowly uncover more. (Or they uncover themselves, smile. I’m also suspecting Lady Gaga and Celine Dion now too.) And I mean outside of all the acrobats who appear annually on all of the talent shows, smile.

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The International 2017 EDS Classification via The Ehlers-Danlos Society

For those unaware, this is the FIRST update since the Villefranche nosology was presented in 1997 (over 20 years before!), and this also supplants and replaces the Brighton (with an “r”, not “e”) Diagnostic Criteria for Joint Hypermobility Syndrome which some also used to diagnose hypermobile type EDS also. So there will at least be less confusion between Brighton and Beighton going forward, even if many of us no longer count as bendy!

ALL 18 PAPERS covering all aspects of the NEW Ehlers-Danlos Syndrome revised nosology and diagnostic criteria are here now.

UPDATE 4/10/18: There’s a new 14th type out now too. No doubt more will continue being uncovered with time. (July 2023: we are still eagerly awaiting the SNP news from the Norris Lab, among others.)

EDS Pamphlet

You might wish to refer to this FAQ document previously shared by The Ehlers-Danlos Society for clarification on the new 2017 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 several Hypermobility Spectrum Disorders for 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 according to TEDS. I like to think of the HSDs as the less visible bulk of patients “below the water line” as shown here:

graphic of an iceberg with labels of EDS above the water line, and HSD below
See the rest of the iceberg! Copyright Jan Groh 2018

I, Jan, unscientifically personally now feel very strongly that the newly recognized Hypermobility Spectrum Disorders as such are NOT rare at all, but also just rarely diagnosed – and not just because they are newly introduced and poorly know about yet. 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!

We are the frequent flyers in all medical offices, after all!

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 also EDS. I will continue to post and tweet to that end, while I finish writing my book. Join me.

I can use your financial support at any level to help keep this blog online here thank you!