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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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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.)
Last updated April 30, 2026
News and Events
April 30, 2026 Catch a special online screening of the EDS film “COMPLICATED” this Saturday, May 2nd for just $3 USD. <– Make sure to use this Eventbrite link^ for these tickets! It is scheduled for 2 pm EST (US eastern time), and will include a discussion with members of the families and the director afterwards. So this is a very special event. The film is normally $14.99 to stream on demand from Open Eye Pictures otherwise. And is available worldwide now to my knowledge. (This screening is available worldwide too, we realize you may be in an inconvenient time-zone though, sorry.)
PS The Road to 2026 massive diagnostic criteria and nosology update will now be published on December 2nd, 2026 per Lara Bloom on Insta last week after teh MUSC MIND conference, 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. I’ll live.
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.
March 20, 2026 The EDS film COMPLICATED by Open Eye Pictures is now available to stream at home around the world, yay! It does cost $14.99 USD, but… they are trying to recoup the costs of making the film still. And it’s a very powerful film. (I watched it and bawled, it really hits hard.) Please spread the word!
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. (See my patreon page linked just above.)
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.)
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.)
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.
May is EDS Awareness Month
And boy howdy are we aware that the landscape is shifting and about to change under our feet before the end of 2026. The Ehlers-Danlos Society who dictate all things EDS because they just do that have already stated (at the UVA EDS Symposium mid April 2026) that they ARE going to recombine the Hypermobility Spectrum Disorders (HSD) newly defined and split out in 2017 back in with hypermobile type EDS, aka “hEDS”, the most common type by far. (There are 13 formally recognized types of EDS as of April 2026 as I’m typing, 12 of which have genetic markers, but the most common type by far, hypermobile EDS aka “hEDS” does not and may never have a single SNP to hang it on. It’s looking very polygenic. I know of at least 3 more SNPs that have been uncovered since 2017, that may come out in December 2026.)
Now, what they are going to call this recombination and how is it going to be classified? Remains to be seen. They also just pushed the date for publication out to December 2nd from December 1st so as not to step on World AIDS Day, which is fine by me. (We’ll live for 24 more hours, I’m pretty sure.) BUT. A huge question mark is now looming in the greater community about the new nosology, aka classification scheme for all of the forms of Ehlers-Danlos Syndromes including hEDS.
For anyone newer reading, the irony is, while hEDS is by far the most common (comprising upwards of like 80% or more of all cases?), it is the only type for which there is no single genetic marker found yet to explain the whole group. Nor even a biomarker – yet. (Some candidates are being uncovered, but are not yet confirmed.) So it remains a challenging and somewhat subjective clinical diagnosis as yet. (See the EDS Toolkit for Doctors for help.)
Question – will they call the new recombination of hEDS and HSD still “hEDS”? Or “HSD”? Or something else? Will they still consider it to be a type of EDS, even if it’s clearly polygenic and the cause is not yet known, nor an easy biomarker fingered yet? (A candidate 52 KDn fibronectin fragment was put forth in 2024, but has yet to be replicated despite two more attempts. And further proteomics studies are ongoing as mentioned above.)
Many who formerly had a diagnosis of hEDS got “demoted” to HSD in 2017, to disastrous effect. I know, the Society claims that wasn’t their intention. But that didn’t matter to folks who lost a very important diagnosis that formerly gave them access to proper care. Or more proper care, anyway. (Very few of us are getting truly proper care, and almost all of us have to fight really hard for what we do get.)
If they boot hEDS out of the EDS pool, I can see this causing incredible confusion in medicine and yet more abuse of patients not considered to be “special” enough for proper care. I have friends who have died or are dying of comorbidities of hEDS and the other CTDs. (Gastroparesis, CCI, suicide, more.) No, it’s not nearly as lethal in general as vascular EDS (I just lost a young friend to that too in March at 44, sigh), but it’s not nothing. And our quality of life is often severely affected.
And, if diagnostic overshadowing is recognized, many folks who have other things like Osteogenesis Imperfecta or other rare types of EDS end up mis or under-diagnosed with hEDS because most western doctors are in a huge hurry, and medicine is gate-keeping access to genetics. (I have a fellow Oregonian friend who has been diagnosed hEDS, but whose spine is literally crumbling in her doctors’ hands. She just had double lumbar spinal fusion surgery last June, and is headed for cranio-cervical spinal fusion next. They ultimately want to fuse her whole spine – hEDS does NOT cause that level of bone weakness, no. So. Watch that diagnostic overshadowing folks.)
And, in doctors’ defense, there are over 20 different conditions they technically need to differentiate from hEDS if they are working the diagnostic process correctly as I show here. (Yes, I’m gonna have a TON of work to do in December 2026 updating my whole website again, sigh.) That’s a lot to sort through even for the most dedicated of doctors with enough time on their hands. And that number is apt to only grow as new monogenic forms are uncovered. (Several have been since 2017. Whether they make the nosology is TBD too.) And this will keep happening as science keeps churning. (It’s churning faster, finally, thankfully as more doctors are “on the case” it seems, huzzah.)
Confusing? I feel your pain. We are all dearly hoping TEDS makes things as simple and clear and well-delineated as possible backed by science. But I’m not optimistic after 2017. It felt very unscientific and back of the napkin to me. But we’ll see. So, I will again say, I do not feel EDS is rare, just rarely diagnosed, especially if they recombine hEDS and HSD, and if they keep whatever they call that (maybe still hEDS) in the EDS bin. But if not, then yes, I’ll change my tune, if the time comes.
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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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