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 3 weeks in January 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 inadvertently 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.
Update 2019: A great place for doctors to start is the EDS Toolkit I helped co-author in 2017 and published by the Royal College of General Practitioners in London. (Free for all to see and use though, not just doctors, nor just the UK!)
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 rapid and painful and disabling “storm” or cascade of onset is thankfully rare (I now suspect both my late parents in hindsight and perimenopause for mine).
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 (I did turn it into a cane in 2017, yay), 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. (You can now help me out with financial support here if you like and thank you!) 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. (This is a common experience for many, especially women and other minorities.)
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 (still, 2019), 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. Experts now say the newly recognized (since 2017) Hypermobility Spectrum Disorders together with the most common hypermobile form of EDS together may run as high as 3.4% of the population. (Tinkle et al 2017)
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)
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).