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Ehlers-Danlos Syndrome (EDS), Mast Cell 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, Mast Cell Disease *(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. They may have all of these diagnoses, but the doctors stop short of seeing an underlying connective tissue disorder and hypermobility, so miss their EDS or HSD to be clear. 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!
* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links. I’m slowly working to update this, but it’s tricky- I’m back linked in several places, so a bunch of links will break once I change page names and URLs. Thanks for your patience! MCD is now the proper umbrella acronym for all forms of Mast Cell Diseases, whether they involve (over) activation or not. Including MCAS, which is just one form. (Other forms include mastocytosis, HaTS, and MMAS.)
Last updated October 3, 2025
News and Events
September 18, 2025 I wrote up an in-depth recount of all I learned from the “Road to 2026” sesssion at the Community Day of the 2025 Scientific Symposium in Toronto on my Patreon page. (I attended virtually on Whova/Zoom.) Upshot: they are doing due diligence with the 2017 diagnostic criteria, and heavily considering re-combining HSD and hEDS, but not certain yet. (Nothing was certain yet, they are still actively cussing and discussing it all.) They also recognize that hEDS is not a single SNP disease, like most rare forms of EDS, though we still don’t have any definitive answers, just candidate genes. (From both MUSC and HEDGE.) But it’s likely polygenic, and involves the extra-cellular matrix. Either join me on Patreon, or stay tuned for more.
And the Norris Lab at MUSC did finally get their initial Kallikrein gene study peer-reviewed and published FTW, yay! No major updates from before. It still only explains a small subset of folks with hEDS (two families and a small handful of others), but… it points to lots of other potential research and possible explanations for some co-occurring conditions. They have gone on to do more studies on proteomics and more. (See my patreon page linked just above.)
August 10, 2025 Pardon our dust: my current web host has unilaterally updended several plugins and widgets on my site, so I’m now in the process of preparing to migrate. Apologies for any bits and widgets that don’t work. (All of my forms are broken atm sorry.) Send questions directly to me at H2OhTWIST (at) gmail.com thanks.
February 23-24, 2025: The long-awaited EDS film COMPLICATED debuted at the 2025 Slamdance Film Festival in Los Angeles that weekend. We hope it got picked up, and will find good distribution soon. (Bendy toes all crossed. I know a lot of folks missed it besides me. I’ll apprise of any news I hear.)
February 21, 2025: EDS was featured on tonight’s episode of Embodied via NPR. Find the latest episode about Soph and Rene.
November 13, 2024: I’m suspending my private (closed) OhTWIST Facebook group indefinitely. But not this blog or my Patreon or my PUBLIC Facebook page. Thanks for your understanding! (And, it is paused indefinitely now, December 1, 2024.) HOWEVER: As of January 2025 – I *may* (still deciding) hatch a new, membership-based group in the new year. TBD.
BREAKING NEWS! September 11, 2024: Potential biomarker found for diagnosing hEDS and HSD per TEDS! Further confirmation needed but results are promising. This is not a genetic test, but a protein found in the blood of both hEDS and HSD patients, and so far only hEDS and HSD patients. Drill down and see.
Follow Chronic Pain Partners for more and to keep up with the latest EDS news and views.
October is Dysautonomia Awareness Month
Sorry for the late udpate, I finished Pain Awareness Month (September) with a timely kidney stone and low-grade infection, whee. So I’ve been down for a bit. Slowly reviving now, still suffering. But I’ll go down typing – or trying!
Anyway, as most of you know, October is Dysautonomia Awareness Month. And all forms of the Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorders are prone to experiencing one or more forms of dysautonomia. Especially Postural Orthostatic Tachycardia Syndrome, aka POTS. When you toss in MCAS, we call that “the Trifecta”. When you toss in even more things I find commonly co-occurring, I call it the Chronic Constellation, and I’m seeing more and more doctors and scientists circle the same drain or hill if you prefer with every passing year.
Anyway, between faulty nervous system wiring, impinged neurology, weak and floppy (easily bulging) veins and and floppy vales, and hypovolemia among other things – POTS doesn’t surprise me a bit. Protip: Many of us find it worsened during MCAS reactions which lend to vasodilation and more. And many were diagnosed after succumbing to COVID (and LongCOVID) since 2020. Take it easy after that hot shower! Maybe have a stool or bench handy. And talk to your doctors.
But others have other forms of dysautonomia, and even causes to their POTS – some have an autoimmune driver (not all) too or instead. One friend and her son have Riley-Day Syndrome, a rare form of familial dysautonomia that lends to sudden oxygen drops and BP spikes or drops due to insufficient innervation throughout their bodies. (Her son has to have a service dog with him at all times to detect these and his silent seizures. And they’re both on oxygen 24/7 now.) It is not at all the same as having POTS that runs through the family. It’s much more involved and debilitating. And genetic.
There are yet other forms of dysautonomia, and yes, you can have more than one. As Hickam’s Dictum states: “Patients are entitled to as many diseases as they damn please!” We have plenty of drivers, after all, including impinged neurology, squished blood vessels, floppy valves and veins, and more that can all lend as I wrote about here years ago. Please get proper and full differential diagnostic workup if you can. See my Dysautonomia Resources Page for more on that.
It is also ADHD Awareness Month, as well as AAC Awareness month. (No I didn’t forget, I’ve just been very busy, including booting my bouncing baby bee photography business.) And October 20th is Mast Cell Diseases day, or was in the past. So, lots to lobby for and about. All of the above are common in our community. (Many of us find we are AuDHD, that is, autistic with ADHD masking it and vice versa.) I know I’ve given ADHD short shrift so far, I’m struggling to catch up and keep up presently. But, I recommend following ADHD Chatter on YouTube, as well as ADHD Love on Facebook and TikTok. (There are many others, but I’m in a hurry and in pain and it’s late sorry!) Suspect ADHD if you are scattered, disorganized, impulsive (interrupt a lot), impatient with others, easily frustrated, forgetful, struggle to be on time and break or lose things a lot and brimming with creativity and ideas and DOOM piles. Yes, many women were missed in childhood because we weren’t as physically hyperactive, more mentally so (daydreamers, anyone?). Awareness is slowly increasing.
And many autistics benefit from the use of Alternative and Assistive Communication (AAC) devices – things like letterboards, tablets, iPads, picture boards, more. Depriving someone of communication is a human rights violation. Please consider that your non-speaking autistic child or family member may know more than you think, but just may not be able to express it to you using speech. (Or not always.) Consider that some of their meltdowns may be driven by frustration with not being able to communicate things like sensory overload, or to correct you about something you’ve said about them, or pain, etc. Presume competence, don’t infantilize. Yes, a few of us may also have intellectual disability, but not all. The inability to speak or use speech to communicate does not mean someone does not understand spoken or written language. Just ask Ido Kedar. Find more resources for Autism and ADHD on my Resources Page.
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If you are wondering if you may have a form of EDS, HSD or a similar related connective tissue disorder, give my When to Suspect and When Else to Suspect pages a glance. (Grab a snack, it’s a deep dive.) Then go back to my Diagnosing EDS and HSD page and tuck in. (Doctors, you should check out this page too.) I dream of the day this is made easier by either genetic tests or biomarkers for all the types. I do think that day is coming in a couple of years. Yet more patience, Grasshopper. We’ll also see what the Road to 2026 brings from the leading charity who have dictated all things EDS since 2017.
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/X) 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 everyone 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!
If anyone is in need of support around depression and suicidal thoughts, call 988 in the US. Or look up support for anywhere in the world here. We see you. We believe you. Your pain is real. And it is NOT all in your head.
Older News:
Ron Davis and family (Whitney and Janet Dafoe) have finally published some findings showing a connection between the immune system and MECFS in a hypermobile patient with some potential for possible treatment here. (April 2024.) Here is some interesting discussion of this paper by the MECFS community.
Good News! As of January 2022 followers will be pleased to learn that the EDS Toolkit for Doctors (aka the “GP Toolkit”) 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
EDS in Celebrities
The Emergence of COVID-19 (SARS-COV2) Worldwide since 2020
January 2023: I’ve hatched 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.)
Indeed, evidence is mounting that we are disproportionately affected by this virus as I feared. (March 2024) In a surprise to almost no one… People with joint hypermobility are 30% more likely to suffer from long COVID, according to a new study by Brighton and Sussex Medical School (BSMS) and King’s College London and published in BMJ Public Health. In addition, this is likely related to higher levels of fatigue in this group.
And, as of 8/11/20, per this article, it appears your homemade cotton masks DO help some, so keep wearing them if you have nothing else. It’s helping.
Added 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.
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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!
UPDATE 4/10/18: There’s a new 14th type out now too. No doubt more will continue being uncovered with time. (See EDS Resources and News pages above.)
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.
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!