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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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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 July 6, 2026
News and Events
June 10, 2026: It’s my understanding that anyone can access independent films on Apple TV, where the EDS film COMPLICATED will debut on May 19th, 2026. (You don’t have to be a subscriber, it’s just another platform to my understanding – please correct me if I’m wrong!) And may only cost $9.99 USD then. Meanwhile, you can still download it directly from Open Eye Pix for $14.99 USD here. And, please check out ElevateRare.org for resources around the issues of rare diseases (all) and medical kidnapping.
PS The Road to 2026 massive diagnostic criteria and nosology update will now be published on December 2nd, 2026 per Lara Bloom on Insta, NOT December 1st as originally stated (and still showing on the Society’s website as of 4/30/26). This is so as not to step on World AIDS Day. Information about standards of care will come out in 2027.
April 2, 2026 I’m very sad to share the news of EDS champion Dr. Rodney Grahame’s passing on 3/29/26. He was the first source to signpost me to the hypermobility syndromes in 2007, which ultimately led to my diagnosis of hEDS by a medical geneticist in February 2012 after I’d landed in a wheelchair hard. He has blessed and likely saved countless lives over the years. I was lucky to meet him at the 2013 EDNF Learning Conference.
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 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 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.
July is Disability Pride Month
Why would you be proud to be disabled, Jan? Isn’t that something you want to hide, or gloss over?
No. Hell no. Here’s why – doing so is called “ableism“. And, disabled people are the first to be sacrificed (thrown under the bus) under any administration or regime as is happening now in 2026 in the US. We have fought and died to achieve the bare-bones rights we have in the USA (passing the ADA in 1990) to be seen and have access to buildings and events like everyone else. While it did a lot to improve things, we still have a long way to go.
And, there is no shame in being disabled! We cannot help how our bodies are. Many of us are born with disabilities, visible or otherwise. And many others acquire disabilities from illness, accidents, war and more. Stop hating yourself/selves. There is no shame in being disabled!
While we’re here, please also recognize that many disabilities are invisible, and variable. My own included. I can sometimes walk without a cane, but my right leg is still loose in the socket and if I’m tired or on uneven ground or stairs, I gotta have it. (And my left leg can and does randomly try to pop out on its own too! Bad leg – stay put!) I spend every morning trying to replace my shoulders and ribs from injuring during my sleep every night when I roll on my sides. Autism and ADHD, depression, migraines and so much more are all invisible. We need to stop presuming to know someone’s abilities or capacity just by appearances. (“But you look so good!”. I know, I know, sigh.) Just… stop judging, right? By the way, how you view others is how you view yourself. Please be kinder to yourself, too okay? – Jan
~~~PS
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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I can really use your support here for as little as $2/month on Patreon
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