Jan Groh OhTWIST author

is creating Writing about Hypermobility Spectrum Disorders and EDS

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I will offer you my undying love at this level, and eventually a copy of my book once it's finally done. 

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Along with my undying love I will also offer a hand made thank you card at the start of our relationship. And a copy of my book when finally out. But like my ribs, you provide crucial General Support I can't live without! TY! <3

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Along with my undying love and a handmade thank you card for your General Support at the start of our relationship, I will also offer a copy of my book once it's eventually out. 

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About Jan Groh OhTWIST author

The short story: Oh, That's Why I'm So Tired! (Get it?) It wasn't the Chronic Fatigue Syndrome I was (blessedly) mis-diagnosed with 30 years ago after all, but something much more complex and multi-layered... maybe this is why you or someone you know is so tired too!

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 aka Myalgic Encephalomyelitis (ME) currently.  

Some poor souls may actually have all of these conditions and more, but it's important to Peel Back the Onion Layers so as not to miss any underlying connective tissue disorders also. Once I did, and started to address them, I was able to attribute all of my chronic fatigue to various comorbidities. Whence my domain name Oh TWIST: Oh, That's Why I'm So Tired!

Some can and do sadly have BOTH syndromes, and may lose decades of their lives to this comibination as Jak so eloquently describes on her blog.

But 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 note cards. As well as copies of my book once it's out!

And if you prefer to make a one-time donation, you can either do so here via PayPal, or:
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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. 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 tried returning to work part-time in the tech field in 2017 to see if I could fund it that way, and ended up flaring again in Feb 2018, almost six years to the day, oops! Darn body-snatchers! 

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 (HSD), and now 13 recognized forms of the Ehlers-Danlos Syndromes (EDS).

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.

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. 

Everyone knows someone with the trait of hypermobility at least, if not an actual Hypermobility Spectrum Disorder or a form of EDS. (Generalized hypermobility alone runs in about 10% of the general population.) You know that "double-jointed" kid who did all the party tricks in class? Yup, that one! Some go on to be performers on shows like America's Got Talent or World of Dance. Thankfully not all seem to have any trouble, or at least, not at first.

People with a form of EDS or HSD will have hypermobilty plus lots of issues with their (connective) tissues 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 tapped me 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! 

I am not putting my blog behind a paywall. But 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! 

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 once finished. 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!

Important update July 2020:
Patreon has been required to start charging sales tax on donations given in exchange for onging (monthly) premiums with any monetary value. E.g. monthly digital downloads, serial books or comics, artwork, exclusive access etc. One-off premiums such as a thank you card or a copy of my book are not taxable.

So I have temporarily revoked the (former) offers I had of Skype consultations as of July 1, 2020 to avoid any possible sales tax happening unexpectedly. I hope to add a couple of new tiers soon that offer Skype consultations which may be subject to sales tax based on your jurisdiction. But all of my existing tiers are now considered General Support, which is not subject to sales tax anywhere.

I thank you deeply in advance for your support at any level. May it return to you a thousand fold! 
Goals
$184.99 of $500 per month
When I reach $500/month I will quit my part-time day job [if I have one! or stop looking for one if I don't!] and focus entirely on the book until it is fully done. I will also start swimming at the OHSU march wellness center at $105/month so I can stay well if I'm not already!
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By becoming a patron, you'll instantly unlock access to 24 exclusive posts
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By becoming a patron, you'll instantly unlock access to 24 exclusive posts
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Writings

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