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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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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 y our patience! MCD is now the proper umbrella term for all forms of Mast Cell Diseases, whether they involve (over) activation or not. Including MCAS, just one form.
Last updated April 30, 2025
News and Events
March 30, 2025: EXCITING NEWS! The EDS film COMPLICATED is NOW AVAILABLE FOR PRIVATE SCREENING via their Impact Program! Yay! Get together with your support groups and friends and host a screening of your own! Details here. So grateful. The struggle is REAL!
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.
In other news (9/16/24), the NIH just featured Connective Tissue Disorders including Marfans and hEDS in their September 2024 News In Health (NIH) newsletter. Featuring Dr. Cortney Gensemer to boot!
June 11, 2024: The Norris Lab just released the preprint of their genetic study which found a Kallikrein gene to lie behind some cases of hEDS…
Follow Chronic Pain Partners for more and to keep up with the latest EDS news and views.
May is EDS Awareness Month
And like many of you, I confess after over 12 years of pounding this drum, I too am growing just a bit weary of how hard we still have to fight to be seen, believed and heard by medicine. Yes, some inroads have been made, a few clinics and clinicians have popped up here and there who do recognize us – but far too few still to field the huge backlog of patients seeking diagnosis and support. (We know there is no cure.) Many patients have to fly thousands of miles with fragile medical conditions to see specialists for things like tethered cord syndrome, Chiari malformation or cranial-cervical instability or settling. And the poorest in the US may be losing their Medicaid coverage if the looming federal budget cuts are enacted in full.
My site is loaded full of great info to help everyone (patients AND doctors alike) to suspect a form of Ehlers-Danlos Syndrome or the newly defined Hypermobility Spectrum Disorders as of 2017. (Which I think need to be folded back into hEDS, even more than ever based on the most recent findings of a common fibronectin fragment in the blood of both patient groups.) But I digress.
Both “ends” of the “spectrum” (rare EDS types and more common HSD/hEDSers) suffer as a result. The former are often missed as having a rare type if doctors don’t do due diligence and rule out the now 13 and counting rare types and just quickly toss them into the hEDS/HSD bin. This artificially inflates the numbers of hEDS patients as this new study shows (2025). And many hEDS and HSD patients are considered to not be as “severe” as the more rare types, when sadly many DO have sometimes truly severe and life-threatening complications like cranial-cervical instability and or settling and more. (I suspect some of these are really misdiagnosed rare folks, but again, we don’t know.) Every EDS and HSD patient is different, even within the same family.
I revised my How to Diagnose page this past year in response. It became clear to me that too many rare folks were getting missed because of the lack of due diligence. And, too many hEDS and HSD folks were also still getting missed. I confess, it’s not a trivial diagnostic algorithm. The EDS Toolkit for Doctors may also help.
Meanwhile, 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.
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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!
A note on Ableism:
The prejudice against disability and being disabled is called ableism. It permeates modern Western society with the idea that you are only valuable if you can produce something useful to society, whether in exchange for pay or not, and that disabled people are a burden and second-thought not worthy of inclusion. This is a very toxic and harmful notion that needs to die, instead of our beautiful children.
Please help us work to eliminate all such prejudice and hate everywhere. We are human BEings. Not human DOings. And please reach out for help if you need some, especially if you’re an overworked carer. Don’t suffer in silence, or take it out on your kids or family. You deserve support along with your kids. We as a society have failed each other by promoting so much rugged individualism. We are one giant human family, IMO. Let’s act like one and help each other out.
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.
Your Support is Needed!
Want to help keep this site as up to date as possible, and keep me off the streets? (Not joking – my rent is over 3/4 of my SSD income now, eek.)
I can really use your support here for as little as $2/month on Patreon
Or you can send a one-time gift to me via the methods shown here, thanks!!
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!