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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% – 20% 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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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.)
**Additional note May 2026: The entire nosology and diagnostic criteria for all the forms of EDS and HSD will be updated on December 2nd, 2026 per Lara Bloom, President and CEO of The Ehlers-Danlos Society on Insta as of late April 2026. Yes, a lot will be changing on my website accordingly then. But until then, I have to go with the current “gospel”, thanks.
Last updated October 8, 2026
News and Events
October 2026: The EDS film COMPLICATED is now available on Amazon Prime, as well as Apple TV for $9.99 USD. You can still download it directly anywhere in the world from Open Eye Pix for $14.99 USD here. And, please check out ElevateRare.org for resources around the issues of rare diseases and medical kidnapping.
Personally, I’m now focusing more on my photography business (I shoot bees, like Gaia’s “paparazzi”), so I apologize for slipping up here a bit. I may not be quite as on the ball as I was for the last 12 years. But I am waiting with bated breath for the new dx criteria update in December, 2026 along with all of you. Meanwhile, I share your grief at the recent passing of so many champions in the field. (John Ferman (November 2025), Dr. Grahame (April 2026), and Dr. Forest Tennant (August 2026.)
NB The Road to 2026 massive diagnostic criteria and nosology update will now be published on December 2nd, 2026 per Lara Bloom on Insta in April 2026 NOT December 1st as originally stated. This is so as not to step on World AIDS Day. Information about standards of care will come out in 2027.
May 2026 via Newsweek: An oncologist relates her experience being medically gaslit and dismissed about her hEDS.
September 18, 2025 I wrote up an in-depth recount of all I learned from the “Road to 2026” session 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, 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 which may pan out sooner than the genetic studies. (I strongly believe hEDS is polygenic still. But I still think this was a solid finding.)
November 13, 2024: I’m suspending (pausing but not deleting) my private OhTWIST Facebook group indefinitely as I need to tend to personal matters now. (This leaves the group intact as it was so folks who are already in it can search the archives for prior answers. But no one can join and no activity can happen now.) But I’m not closing this blog or my Patreon or my PUBLIC Facebook page. Thanks for your understanding! (And, it is paused indefinitely now, December 1, 2024.)
Follow Chronic Pain Partners for more and to keep up with the latest EDS news and views. And find my very colorful bee-centric photography here now since 2025.
October is Dysautonomia Awareness Month
And sadly, all EDS and HSD patients seem to experience one or more forms of dysautonomia thanks to our weak connective tissues, and twitchy mast cells, and more. There are several forms of dysautonomia. The most common form experienced is Postural Orthostatic Tachycardia Syndrome, aka “POTS”, but… not everyone actually has this. Some have Orthostatic Intolerance, others have Familial Dysautonomia, a rare genetic disease also known as Riley-Day Syndrome.
As if managing 206 loose bones and twitchy mast cells weren’t enough, we get to try to also manage our faulty autonomic nervous systems, whatever the causes and drivers. This includes all the “automatic” things you do, like breathing, heart rate, blood pressure, digestion, and more. You know, all the things you normally don’t have to think about. When most folks get up from bed, their blood rushes to their legs and feet, but it usually returns back up to the heart and the head within a few seconds and the first few steps.
Folks with POTS struggle to get their blood back up to the head and heart, lending to dizziness and even fainting in the worst cases. We’re the folks who can’t stand for very long, or may walk into a grocery store looking “fine”, only to use a motorized shopping cart to your surprise. You may even catch us salt-loading to your surprise – some of us NEED salt for sufficient blood volume!
We struggle to regulate our temperature, among many other things. It’s a lot to manage on top of all else we have going on. We thank you for your patience and understanding if we “look fine” to your eye, but we are requesting special accommodations or extra help at times you wouldn’t expect.
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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. And/or other related awareness campaigns. 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:
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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