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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* Editor’s note: I realize my site still refers to the outdated term “MCAD” in several places, including in my menu and links.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 December 1, 2024
News and Events
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.)
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.
HURRICANE HELP for disabled folks as of October 2024:
New Disabled South is both receiving donations and providing one-time aid to disabled people affected by both hurricanes in the southern and southeastern US. They first set up a page for Hurricane Helene in late September 2024, so Milton (who landed October 9, 2024) isn’t mentioned, but it will work for both, I checked. Demand is outstripping supply at the moment, but do not hesitate to apply anyway:
- Donate to New Disabled South: https://go.newdisabledsouth.org/reliefdonate
- Apply for one-time aid from New Disabled South: https://go.newdisabledsouth.org/helene
FEMA is up and running just fine and providing assistance to everyone affected by natural disasters in the US. They have NOT run out of money, contrary to nasty rumors and scare-mongering. Please do not hesitate to apply to them for aid in your area too:
- www.disasterassistance.gov
- Phone: 1-800-621-3362
I welcome additional links to share if you have any. Please email me at h2OhTWIST@gmail.com thanks. We know disabled and seniors are often left behind during evacuations, and least able to ride out such storms and disasters. Our thoughts are with you at this time.
December is Constipation Awareness Month
Yeah, I know, not a pleasant topic but an all too painful reality for many with connective tissue diseases and disorders and MCAS. Toss in gastroparesis in many of us, and well, it’s a really challenging combo, as some folks can’t move food through their systems almost at all. This lends to malnutrition, pain and disability for many. It is truly no laughing matter for those suffering. (Raises hand.)
Recent studies are showing that GI disorders (usually labeled IBS by busy doctors unwilling or unable to drill down further to find root causes) are almost universal in folks with EDS or HSD (or related conditions). Many of us find our twitchy mast cells (diagnosed or not) lend to this issue.
Yes, you really can have multiple issues and systems affected with a systemic connective tissue disorder. The modern silo-ing of medicine just makes it harder for everyone to connect the dots. I hope my website is helping everyone to do so: both patients and doctors.
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!
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:
Connective Tissue Disorders: Recognizing and Treating Structural Defects via the NIH September 2024
Find the rest of the headlines featuring EDS or HSD in various news outlets here now.
EDS in Celebrities
The Emergence of COVID-19 (SARS-COV2) Worldwide since 2020
COVID-19 emerged on the world stage in early 2020, and is continuing well into 2024 now as you probably know. We’re just letting it rip now, since February 2023, much to our chagrin as often immunocompromised patients, vaccinated or not. After a minor summer dip in 2023, numbers shot back up as of September 2023 as school went back in session in the northern hemisphere at least.
The actual death rate may be down now thanks to vaccinations, but… many of us are still having to lead isolated lives still shielding due to our fragile health and primary immunodeficiencies many have. We humbly ask you to wear a mask if you can in any crowded public spaces for our sakes, thank you. (They do help.)
Here is what The Ehlers-Danlos Society advised in 2020 for what it’s worth. (Mostly WHO guidelines without specificity to EDS.)
A couple of other articles of interest to our community in particular:
- Covid-19 hyperinflammation and post-Covid-19 illness may be rooted in mast cell activation syndrome 2020 Afrin, Weinstock, Molderings
- COVID-19, Mast Cells, Cytokine Storm, Psychological Stress, and Neuroinflammation – Kempuraj, Selvakumar, Ahmed et al July 2020
- Orthostatic Intolerance after COVID-19 Infection: Is Disturbed Microcirculation of the Vasa Vasorum of Capacitance Vessels the Primary Defect? December 2022 Wirth and Lohn
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.
Please take care not to “whale watch”, that is, go leaping from one highly touted solution to another. “Oh look, a solution over here!” “Oh hey, there’s another one over there! Ooh!” leading to “wildly careening about the boat” so to speak. For COVID or any other condition.
We are all desperate for answers and “cures” but this is how snake-oil salesman make their livings. Pause, and gather data. And consult YOUR doctors and practitioners first. And listen to your own bodies. Always. There are no panaceas, sorry.
And, as of 8/11/20, per this article, it appears your home made cotton masks DO help some, so keep wearing them if you have nothing else. It’s helping.
ETA 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
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. (July 2023: we are still eagerly awaiting the SNP news from the Norris Lab, among others.)
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.
I.e, they are subclinical for hEDS as I was for my first 44 years, and may now be technically again since I stiffened so much with age and arthritis. Kind of like how Pluto was re-classified to a dwarf planet 10 years ago right? It never changed a spot. We just changed our minds about it.
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!