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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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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 April 1, 2026
News and Events
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!
Meanwhile, the Road to 2026 has been confirmed to be on schedule to publish the newest EDS and HSD nosology and diagnostic criteria on December 1, 2026 in the American Journal of Medical Genetics. Care recommendations will come in January 2027.
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.)
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 (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.
April is Autism Awareness Month
I know, I missed March this year, sorry. I was being swallowed whole by a temp-to-perm Access programming job audition, and I just washed out. So, I’m back again for April. Thanks for your patience. (I try to feature our major comorbidities here on my home page every month since we have so darn many.)
As always, I concur with those who feel we need less autism “awareness” now, and more interest and support – for all levels. Battles continue to be waged over the erasure of both “ends” of the spectrum. The more “visibly autistic” folks with higher support needs in Level III feel like their voices are erased, since many are non-speaking and reliant on aides or technology, and sometimes can’t break through to us even then. And are often mistaken as having intellectual disabilities when they do not always. They just need a way to communicate. (I see and feel you, folks. Hint to parents: consider they may be telepathic sometimes now too and uhm, open your minds.)
But those of us in Level I with lower support needs are struggling because we may look fine/functional, but our needs are much less visible. (We can mask and pass better, sometimes too well – raises hand.) We may have language processing delays, sensory overwhelm, co-occurring painful conditions, disabling anxiety and more. But “you look good” and don’t need help dressing or bathing. So. No support for you!
And many folks in Level II find their level of disability and needs to fluctuate highly. They may be fine one day, or part of one day, but not the whole day. No confusion there, no!
I do feel those of us in Level I need to check our passing and masking privilege a bit, and try to be more inclusive of others in our spaces. Especially those with co-occurring ADHD, which lends to super fast speech and jumping around from topic to topic. Heck, I’m AuDHD and I struggle to follow my faster friends and colleagues. (I’ve stopped trying as much, I just can’t.) That’s great when you’re with folks who can keep up, but you’re erasing slower processors and non-speakers still. And often overwhelming even folks like me. (I can process less the more my pain increases.)
Unrelated: Dr. Emily Casanova and I are still trying to pull a Hail Mary and get that book out on EDS and autism that I’ve been teasing for 2 years. It’s not dead, just… floundering a bit. We are working hard to revive the patient and get it to the finish line along with our 13 co-authors. (All busy folks, some with major medical issues.) You’ll know when it’s ready. (Not if, when! We’re determined!)
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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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