About

Picture of Jan

Jan Groh 2010

Portland, OR native and sometime database programmer, musician and photographer, I hatched this blog to share my crazy individual journey discovering the hard way in 2012 that I had a likely genetic collagen defect called Ehlers-Danlos Syndrome in my mid 40’s after a very challenging lifetime of struggling to be medically heard and recognized until then.

I suddenly went from walking to wheelchair in 2 weeks in February 2012 during a so-called “storm” or cascade of onset of “hypermobile type” Ehlers-Danlos Syndrome aka hEDS, after a formerly very active life as a Balkan folk dancer, database programmer, gardener and photographer with some issues of course!

Needless to say this was rather abrupt and eye-opening for many, including my doctor and me who had both failed to give all my myriad odd symptoms much weight prior to that point. Now we both sat up and listened to my shattered body, and boy did it have a lot to say! I’ll say this much, being a subclinical EDS patient is very challenging.

I had struggled off and on with debilitating chronic fatigue, generalized joint pain, environmental sensitivity, fibromyalgia and depression through my 20’s and into my 30’s with varying levels of success. I was even diagnosed with the never well defined “Chronic Fatigue Syndrome” in my 20’s, but felt that there was always something more going on.

I gave up trying to convince anyone, doctor or otherwise that something was organically wrong and just got on with life the best I could, finding my true friends along the way and struggling to keep up with “orthotypicals” (my term for people with normal collagen) in the work place. (I so no longer think I’m a wimp!) I even managed to travel to Europe and the Utah Canyonlands along the way, thankfully. Boy am I sure glad I did, as little did I know it would all come to a fairly screeching halt in early 2012 as described. The world wasn’t coming to an end in 2012, just mine as I knew it heh.

Thankfully I was quickly introduced to several incredible online support communities who helped guide me through the experience of getting diagnosed and most importantly, coping with my new found disability. (Thanks Jessie in Oz!) Oh, That’s Why I’m So Tired!

I quickly learned that there is a ton of misinformation and confusion “out there” around this condition, thanks to it being poorly known by several different names in different countries and medical disciplines and even more poorly (rarely) recognized by most doctors who don’t yet realize it’s really not rare anymore despite what they’ve been taught.

As I joined the online support community and started trying to find and provide answers, I learned how extremely important it was to get those answers right, lest I misguide an unknown number of fellow sufferers inadvertangly with the mere click of a mouse. We are all point sources of information in the social media age. We should all take care to vet & verify our information, but not all do.

I also began learning about the seemingly endless variations on a theme of connective tissue disorder and related comorbidities you could possibly want, and boy are there a lot of them! Fasten your seat belts and get out your medical dictionaries and suspend your disbelief, it’s quite a ride.

That said, I will try not to overwhelm anyone if possible, and will note it’s important for patients to be as patient as possible with their new found information while they get their doctors and loved ones up to speed. We’re all stuck becoming medical educators to some extent.

Further, I will add the disclaimer that though somewhat smart and medically well-read and educated, I am not a doctor, and accordingly, nothing I share here should be construed as medical advice of any kind. Please consult with your preferred medical practitioner about your own individual health care, always!

That said, on a hopeful note, I want to re-assure my followers that having such a storm of onset is thankfully rare (I now suspect both my late parents in hindsight), and I’m back out of the wheelchair after two long years of slow steady hard work in a warm water therapy pool and in my kitchen adjusting my diet and improving my nutrition, and foresee staying that way if I can keep this up. I now bike and swim better than I walk, but I do walk a bit again with a Loftstrand (forearm) crutch. (I used to need two.)

I ultimately hope to ditch this last crutch in the next year (still trying, 2016), but am presently thwarted by a loose right leg socket and ribs. It keeps coming back out after I walk very far on anything but a smooth wood floor in slippery bottomed shoes that allow me to slide, sigh. Still! Great improvement! I just can’t lift, push or pull much and still have occasional flares, but I no longer fear them, having learned to just ride them out patiently and gently. Thankfully I can now, thanks to being on SSD. All this hard work recovering and maintaining is truly a full time job now. So there is hope of recovery to at least some degree if not fully.  Though I’m not done trying yet by any stretch, never fear!

I’ll add that I was a very “bendy” or flexible child (most mistake this to mean “hypermobile”), able to perform “party tricks” like the splits, and walking through my hands bent over backwards like the Ross sisters do here until about age 10. Many of us go on to be performers of some kind, often dancers, (especially ballet), musicians or acrobats. (Yes, we’re “those” people.)

I stiffened up in my 20’s though, and forgot about my bendiness for the most part as I slowly launched my database career. Thankfully I remained fairly physically active though, which I’m positive helped me get as far as I did before succumbling to my “storm” of onset in 2012. None of my doctors picked up on my hypermobility and chronic joint pain as anything other than just “depression” or hormones, sigh, since nothing showed on x-rays or scans.

So I sort of stopped listening, and just got on with life, until I became quite visibly afflicted. It takes 10 years on average to get diagnosed as of 2014, though the internet and hopefully blogs like mine are slowly helping reduce this. It technically took me over 25 from first onset of noticeable symptoms. Ah, 20/20 hindsight! (Why I’m blogging!)

While some forms of Ehlers-Danlos Syndrome are quite rare – some extremely so, thankfully, the type I have, hypermobile EDS (hEDS) is not, and taking all the forms together the leading experts now believe the collection of genetic collagen defects known as the Ehlers-Danlos Syndromes may run in as high as 2% of the general population.

I’d have to say I agree since falling down the unending rabbit hole of diagnosis in 2012 and continuing to learn large amounts daily ever since. Once your eyes are opened, you see EDSers  or “zebras” as we call ourselves everywhere! Most are just not as visibly afflicted as myself, alas. I call them the Walking Wounded.

We’re the ones with all the diffuse non-arthritic joint pain (though often with early onset arthritis too) and troubles and tendonitis and muscle and tendon tears (among many other issues!) It is truly one of the most unbelievably all-encompassing, systemic, mind-blowing and life-altering conditions you could ever wish for. I’d almost rather go back to being unheard, smile. Almost.

Humbly, Jan Groh, HEDS & MCAS survivor and advocate (@jandroid)

Photo of Bryce Canyon

Bryce Canyon View

16 Responses to About

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  8. bethany emerson says:

    Hello! I randomly came across your blog. My fiancé’s sister had EDS (she passed away almost 2 years ago). She moved to Seattle to purse her dreams, where she finally found out what was wrong with her. This is something she struggled with her whole life… Doctors telling her she was faking it, etc! Along the way she met many people with EDS in and around the Washington area. I’m so glad I found your blog. She would be happy 🙂 Let me know if you would like to connect with more people around your area that struggle with similar things as you and UNDERSTAND (it’s hard to find people that get it).

    Stay well,

    Bethany

    • Jan Groh says:

      Thanks for the note and encouragement Bethany. I’m so sorry for your fiance’s sister’s loss – that is tragic. I’m happy to share however that I am very well connected with the local support community here in the Pacific Northwest (Portland, OR specifically but Seattle, WA too) as I ended up leading the Oregon EDS Support Group for a year in 2012-13 and growing it from 25 to 250 in that time. We’re now up to almost 350 online on Facebook and growing daily. And I’m also leading the PNW Chapter of The Mastocytosis Society currently covering everyone from BC down to southern OR plus Idaho, so am acquainted with a good swatch of regional patients. (Most of the Masto and MCAS patients do eventually find they have a form of EDS too unfortunately – we still don’t know why, but the NIH is studying this comorbidity as I type.) But I appreciate the offer. Be sure to connect with OR EDS if haven’t yet yourself and send folks their way – I can’t agree more: it really really helps to find kindred spirits with this life-altering and crazy making condition. They are at http://oreds.org

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  10. Kenneth King "Kenny" says:

    How do I follow your blog?

    • Jandroid says:

      Hi Kenny, I just looked on both my iPhone and my pc and I do have a “subscribe” widget on the bottom right hand side of all my pages you should be able to use. Just enter your email there and hit submit. It’s on the right hand side, underneath the “Follow me on Twitter” and “Follow me on Facebook” bits, which are under the “Recent Posts” and “Categories” lists. Let me know if you can’t find it and I can enter your email for you. Thanks for your interest!

  11. Bridget Miller says:

    I have decided at the ripe old age of 64 (next week) to gather as much info as possible on EDS – Hypermobile type and finally get a diagnosis. I happened upon on “When Else to Suspect Ehlers-Danlos Syndrome”. I just went through the list and can check off at least 37 things!
    I have had 11 joint surgeries, fractured ankle, sprained it more times than I can count. Now have SI joint dysfunction. I am so worn down by the constant pain and would love to get some relief.
    I have asthma, Celiac disease and recently diagnosed with autoimmune Limbic encephalitis and a type of epilepsy cause my a mutated gene.
    I could go on but I think you get the idea. I wanted to thank you for having this site to refer to.
    I recently found a very good primary care doctor and think when I see him and present all the info I have compiled he will be willing to listen and if he can’t help me at least point me in the right direction.
    Thank you again for sharing your life so others may finally get help!

    • Jandroid says:

      Aw thanks for your kind words Bridget, and I’m so glad to hear that my story and my website are helping to empower you to pursue a possible diagnosis for yourself now. It’s never too late, IMHO, and even though you’re in the latter half of your life, you can still inform younger family members who may also be affected too.

      What a journey you’ve had – and much too typical I’m afraid. We are so stoic we just keep sucking it up and soldering on eh? Way to prevail despite so much pain and trouble. BTW, although EDS itself is NOT auto-immune at all, I’m finding it highly comorbid with all forms of autoimmune diseases as I describe here. I believe it’s because of our likely leaky guts and chronic inflammation from also highly comorbid MCAD (mast cell activation diseases – think “extra” allergies and sensitivities they can’t easily test for):

      http://ohtwist.com/2016/02/17/the-chronic-constellation/

      And check out my Diagnosing EDS page to hep prep for your doctor:

      http://ohtwist.com/about-eds/diagnosing-eds/

      And then harvest all you want from the resources page(s) here too if you haven’t already:

      http://ohtwist.com/eds-resources/

      Best of luck to you! Thanks for writing – Jan

  12. Terri Ehrlich says:

    I ran across your blog during a web search for connections between EDS and lymphedema, and love it! However, in one of your posts you stated POTS is characterized by low blood pressure and fainting. Neither one of these is diagnostic for POTS. The criterion is simple – a rise in pulse of 30 bpm when standing from a reclining position, or a rate of over 120 bpm. It is not necessary for the blood pressure to drop, nor for the sufferer to pass out. Many POTS patients never faint. Please make sure you are passing on correct information.

    • Jandroid says:

      Thank you – I appreciate this feedback. Lord knows this is such a complex package of issues I’m bound to get something wrong, so I don’t mind added clarification one bit! And as I’ve confessed in at least one place, I’ve given POTS and dysautonomia short shrift so far, as I’ve been overwhelmed with EDS and MCAS the most myself. I’ll try to seek out and find where I said that. (Feel free to drop a link below this comment to help speed the process up for me.)

      Thanks!

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