Ehlers-Danlos Syndrome (EDS), Mast Cell Activation Diseases (MCD) and Dysautonomia – Oh! That’s Why I‘m So Tired!!
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!
News and Events
March is Mental Health Awareness Month
CW:TW: Discussion of death and filicide – that is murder of disabled children by a family member.
It is also Endometriosis Awareness month, MS Awareness month, but March 1st in particular is Filicide (Disabled) Day of Mourning. Something we see all too common in the autistic and neurodivergent community.
Please, please parents and friends, aunties, uncles and siblings, if you are overwhelmed and can’t care for your children or a disabled family member for ANY reason whatsoever, any reason (no judgment!), please please reach out for help. No judgment or shame!
It is far better we get you proper support or re-home them, than that you take this drastic last recourse. Some of us just were not cut out to be parents or carers and need help, or sometimes we feel too badly about what we passed on, and feel like killing our children is a merciful option – IT IS NOT.
NB There are no mistakes. All children, and so ultimately people belong in the world, whether they can “contribute” or not. You may have to stop trying to define your self-worth based on western capitalist ideals to fully feel this. This is peak ableism.
I’m sorry that our society is still SO ableist* that we lack sufficient support for disabled families, such that this is even considered an option. I dream of a better day and world for us ALL where no one feels ashemed of their disability, or like a burden. You deserve better, and disabled kids and people deserve to live. Being disabled is NOT the end of the world – it’s really really not! Especially with our increasing connectivity thanks to technology now. We do need to keep improving our support systems for disabled families, but that won’t happen if we just give up!
Remember, we are human beings, not human doings! You matter whether you can work at all or not. Period. QED.
*Here’s a PDF that discusses ableism (15 pps)
ETA late Feb 28, 2023: I just learned that February is (was) also Median Arcuate Ligament Syndrome aka MALS awareness month, and wanted to quickly add that in on this, Rare Disease Awareness Day! (I may keep this bit into March since I added it so late.) It’s yet another of our many many co-occurring conditions, that is also considered rare. (Not all with EDS have it, nor am I sure that all with MALS have EDS or HSD, but there’s a significant rate of co-occurrence anyway.)
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!
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:
‘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 2022 now as you all know.
We’re deep in the Omicron variants in the US as I type this in February 2022. We’re just letting it rip now, in February 2023, much to our chagrin as often immunocompromised patients, vaccinated or not.
The death rate may be down 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.)
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 ETA February 2023: I’m not sure if this will be continued much longer, so I would pounce on them now while you can. (It may go away once the Emergency Order is revoked.)
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:
- Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome 2020 Afrin, Weinstock, Molderings
- COVID-19, Mast Cells, Cytokine Storm, Psychological Stress, and Neuroinflammation – Kempuraj, Selvakumar, Ahmed et al July 2020
- Orthostatic Intolerance after COVID-19 Infection: Is Disturbed Microcirculation of the Vasa Vasorum of Capacitance Vessels the Primary Defect? December 2022 Wirth and Lohn
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.
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 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
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
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:
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!