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Ehlers-Danlos Syndrome, Mast Cell Activation Diseases 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, MCAD (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!

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


News and Events


January is Thyroid Awareness Month

This was one of the first and most common co-occurring conditions (comorbidities in medical speak) I observed way back in 2012 as a newly minted support group leader in Oregon. (I grew the group from 25 to 250 from my wheelchair that year, even managing to hold a not so mini conference in May 2013.)

I learned about Hashimoto’s and Graves disease in short order, as many complained of these in addition to their signs of EDS. And I did a small dive down that rabbit hole, learning the very important fact that you can be hypothyroid EVEN WITH NORMAL TSH LEVELS.

I can’t emphasize that last line enough. Almost no western medical doctors who are not also naturopaths or trained in functional medicine recognize this. How can this be, you well ask? Well… your thyroid may be working just fine, and your TSH levels are accurate in so far as that goes. But… if your liver is inflamed or otherwise compromised, or you are particularly sick or stressed (Mono? COVID, anyone? among other issues), you may not be properly converting T4 to free T3, the form the body ultimately uses. (Levothyroxine is supplemental T4 for the record.) Which is done in the… liver. But good luck getting a doctor to delve into the above, sigh.

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, 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!)

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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 in 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:

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

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 2022 now as you all know. We’re deep in the Omicron variants in the US as I type this in February 2022. I’m personally suspecting it may take at least another two years to fully play out and slowly become “endemic“.

People residing in the US: As of January 2022, every home in the US is eligible to order 4 FREE at-home rapid antigen tests (RATs) via covidtest.gov

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 work folks – so keep wearing them if you can. It’s helping. (I know not all can.)

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 (as of 2019) 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.)

EDS in Celebrities

Yes, I know that Sia, Jameela Jamil 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 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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May 2017 historic EDS update

Ehlers Danlos Syndrome Awareness Month

May is Ehlers-Danlos Syndromes Awareness month and boy did we have some updating to do in 2017! Thanks to the brand new 2017 EDS  nosology and diagnostic criteria published March 15th, 2017 there were 7 new rare types to know about (making a total of 13, up from 6 before), and they tightened the criteria for the most common form, hypermobile EDS making it (technically) rare again.

UPDATE 4/10/18: There’s a new 14th type out now too. No doubt more will continue being uncovered with time.

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

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!

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 successfully rolled out a brand new, brilliant “EDS Toolkit for Doctors online for their General Practitioners (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.

ETA May 2022: It was just migrated FROM the RCGP (rcgp.org.uk/eds) TO The Ehlers-Danlos UK (gptoolkit.ehlers-danlos.org) organization this year, where it will live on indefinitely now. NB This is NOT The Ehlers-Danlos Society, an entirely different, international organization that ends in dot com.

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

EDS Pamphlet

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 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!