I'm writing to shed light on what I strongly believe may well underlie a large percentage of chronic illness, but may be getting mistaken for several "red herrings" like Fibromyalgia and Chronic Fatigue Syndrome currently.
And I can really use your financial support now at Patreon to continue writing while disabled from it myself! ---> Please subscribe to my page monthly at any level (as low as $1/month) over on the right - Patreon makes it really easy, and you can unsubscribe at any time! --->
I will shower you with my undying love, my pithy and sometimes poetic writing, and in some cases my photographic notecards, and some Skype consultations. As well as copies of my book once it's out! (SOON! Especially if you subscribe NOW!) :)
And if you prefer to make a one-time donation, you can either do so here via PayPal, or send a check to me, Jan Groh at: PO Box 86824 Portland, OR 97286 also. TY!
The Long Story or How this all started...
I went from walking to wheelchair in three weeks semi-suddenly in January 2012 at 45 from a severely disabling onset "cascade" or flare that finally got me diagnosed with a connective tissue disorder (hypemobile Ehlers-Danlos syndrome) that explained my lifetime of troubles.
Finally, the book I'd been gestating all my life could be born! And is well underway with just 2 of 18 chapters to go. I hope to have the first edition out in print this Christmas 2018. But you have to "pay to play" when you self-publish as I've found, so I need your help to do so, while staying fed and watered while disabled!
I just tried returning to work part-time in the tech field again to see if I could fund it that way, and ended up flaring again recently, almost six years to the day, oops! Darn body-snatchers! But I had fun trying, and it felt good to take my brain out for a run again, if not also my body. (That's why they call me "Jandroid", the creative android, smile.) But it also took all my spare writing time too.
Meanwhile, I work hard posting daily on Facebook and Twitter as well as my blog to bring patients and doctors alike the latest and greatest insights and information on the newly (2017) recognized Hypermobility Spectrum Disorders, and now 13 recognized forms of the Ehlers-Danlos Syndromes.
As well as the myriad of complex comorbidities and complications they seem to come with quite often, including Mast Cell Activation Diseases (or Disorders), Autism, and much much more...
I personally have taken to unofficially calling this collection of common comorbidities the "Chronic Constellation" for lack of a better hook to hang it on. I now feel very strongly that:
Everyone knows someone with a Hypermobility Spectrum Disorder, if not a form of Ehlers-Danlos syndrome!They (and you) just may not realize it yet. While the latter are still considered rare, I'm deeply convinced the former are not, but really, just rarely diagnosed. And I am deeply convinced most with what we currently call Fibromyalgia may really actually be hypermobile with as yet unrecognized comorbid MCAD among other things (dry fascia, small fiber neuropathy from demyelination we find also and nutritional deficiencies) lending to the widespread unexplained and often severe pain. Dr. Jaime Bravo in Chile agrees with me, and considers fibro a "symptom" of hEDS or EDS III as it used to be called. (We've discussed this by email.)
But doctors aren't looking for the new HSDs or EDS much yet, because they've only been told about the grossest signs of the rarest types all this time. Or, in their weary defense, that is all they can remember from the thousands of things they learned in medical school! They are just fallible humans too, after all, and often over-worked. They are also taught to think and diagnose "horses" not "zebras" upon hearing hoofbeats... at least in the West.
And hypermobility by itself is just a trait, like red hair color that may run in as high as 10% of the general population or more. It lends nicely to yoga, ballet, gymnastic and other performance careers. I personally suspect Elvis may have had this, among others. Chronic pain and insomnia much? Smile.
Everyone knows someone with hypermobility at least, if not an actual HSD or a form of EDS. (You know that kid who had all the party tricks in class? Yup, that one!)
People with a form of EDS or HSD will have hypermobilty plus loads of connective tissue issues and chronic unexplained wide-spread pain that drive them to see the doctor a lot: tendinitis, bursitis, carpal-tunnel, fibromyalgia, early onset arthritis, loss of cartilage (bad knees and hips that need early replacing), back pain and trouble, headaches (including migraines), IBS, hernias, prolapses, hemorrhoids, fallen arches, easy bruising, weak or cracked and crowded teeth, myopia and more! As some bright unknown person said:
"If you can't connect the issues, think connective tissues..."*
*Dr. Collins merely quoted them in 2014, but said she doesn't know whose quote that is either! I'd love to give them proper credit some day...
Currently it takes 10 years on average to be diagnosed with any form of the Ehlers-Danlos syndromes or the newly reocgnized HSDs. It took me over 25 from my first major complaint at 20 to be diagnosed with hypermobile type EDS in 2012 at 45, only after suddenly going from walking to wheelchair in 3 weeks in January 2012.
My late parents were never diagnosed despite clear signs on both sides of my family, including a diagnosed cousin now.
This must be improved!
That is why I started my blog in 2014 toward the end of helping everyone to suspect these conditions much sooner, hopefully leading to much accelerated rates of diagnosis and improved medical support. My writing has been well-received in the wider EDS community. So much so in fact that a primary care doctor (GP) in the NHS in England is tapping it to draft a toolkit for teaching General Practitioners over there to suspect and start diagnosing hypermobile patients much sooner. She found and followed me on Twitter in fact!
And... most exciting of all, I've been leading the way in finding some healing and recovery from this lousy constellation... although there is no true cure (since it's heritable as far as we can tell). I am back walking again (albeit with a cane) and working again (albeit very part-time). I was able to do this through very individualized supplementation and a customized physical therapy and exercise regimen I'm trying to continue on my own.
Which is where you can also help: your monthly support will keep me in supplements (about $80/month) and help me afford a membership to the local saline therapy pool I really need. (Currently out of reach for me at $105/month.) Among many other things!
However, I will NOT put my blog behind a permanent paywall, as I'm well aware that a vast majority of undiagnosed patients are quite disabled and often very poor as a result of this condition. Yet they are the ones who need this information the most.
I am simply holding my hand out here on Patreon to humbly ask those who are willing and able to support me at any level monthly (starting as low as $1/month!) to please do so, much like a busker does on the street. I'm grateful for this new digital platform enabling writers like myself to do so now! (I may publish my blog posts here first, then later publish them at OhTWIST.)
What's in it for you? Besides great wisdom and more insight into hypermobility than most doctors on the planet currently... smile.
What I am offering my paying supporters here, besides my undying love, is the satisfaction of knowing that you are helping me to maintain MY fragile health while being able to devote more time to my writing (including my first book coming soon) without having to work as much out of the home (or even at all) if possible. (So I have more writing time when I'm not recovering from busting moves!)
As well as helping to empower thousands or more by proxy who read my blog and upcoming book(s) to suspect these conditions sooner and accelerate their diagnostic journeys. I've already developed a decent following for just this reason.
And, I will offer a handful of odds and ends like hand made photographic thank you cards and copies of my book and Skype consultations for those with questions. Please see my reward tiers on the right side of this page for details there. But you can give at any level you like, and you can always adjust the amount or unsubscribe at any time should you need or wish. Patreon makes it really easy for both of us!
I just ended up flaring and going down again because of doing too much recently, February 2018. So I can really use your help keeping me from doing so again. I'm almost done with my book, but needing to work outside the home has delayed its finish. And the stress of trying to juggle it all alone is proving detrimental to my health. (I'm still disabled after all.)
I thank you deeply in advance for your support at any level. May it return to you a thousand fold!