Alan Pocinki

Hitting a wall

I suppose these are my annotated frustrations from this afternoon's interaction with a physician.  I will not divulge their name, specialty, or any information that can be misconstrued as defamation, for that is not my intention.  Just my accounts of an interaction that was not necessarily medically accurate.  I will also refer to this person as, "the other party" or TOP throughout in an effort to remove myself from any unnecessary negative associations, because that's just not necessary.

Inaccuracy #1  - I was not asked what my symptoms were when TOP walked in the door.  I got the perfunctory hand shake/"nice to meet you" and bam "your MRI is absolutely normal."  (First of all why start with that, and so emphatically using large hand gestures)  "Okay , but the pain in my neck?  It's causing strain and headaches."   To which the other party responded "Ehlers-Danlos is not know to have chronic pain."  To which I of course responded "of course it is."   I felt myself getting very angry, and I grabbed the paper I had brought to help mediate our interaction, to try and be as productive as possible, entitled "Neurological and spinal manifestations of the Ehlers-Danlos Syndromes" and began to express my concern for a condition which was explained in the article, and fit the bill for what I was experiencing, as I handed the paper over.  TOP took it from my hand and placed it immediately back on the chair next to my purse and said "Ehlers-Danlos does not present with  [these] symptoms."  I responded "If it does not present itself with [these]symptoms then why is there a paper on it?"  TOP mumbled "American Journal of Medical Genetics, no," as they laid the article down.  

Inaccuracy #2 - TOP also kept referring to a college friend who had Ehlers-Danlos throughout our interaction, and that he passed young from a vascular issue in his brain.   Towards the end of our interaction TOP again referred to this friend, and said "but they have the genes figured out for all of the different types now."  I responded "no they do not.  They have not found the responsible gene for the hypermobile type."  TOP responded "well my friend had type four."  I said " they don't use that terminology anymore, there was a new international classification released on the 15th," then mumbled something I had a hard time deciphering.  

Let's be honest, sometimes talking to a Dr. is like trying to hit a rubber wall with a with a piece of fly paper.  You'll never get your point across, or anywhere for that matter because the other person in the room is not willing to listen.  While this most definitely can, and DOES, happen with any random person you encounter, it definitely put me off for a moment.  I have had a few great encounters with physicians.  To be honest I know there are amazing doctors out there, I just haven't been physically in the presence of any who are interested in the pain, or the symptoms that I am experiencing.  I can name people, but that would not take into account the dynamics influencing the other party.  I understand the physician walking in the door who has never seen you may or may not have a million things running through their heads that day too.   I also never wish to turn any personal documentation, post, opinion into a doctor bashing session.  That just is not productive, and who has time to let situations that never gave you a road to journey down in the first place, your precious time or theirs?  

I also wish to clarify that I am grateful for every single person/physician who devotes their life's energy to science, medicine, and being proficient in the art of human connection, and healing.  I know there are enough caring physicians out there, that I WILL interact with one, or many of them.  Physicians are people, sometimes it doesn't work out and that's always okay.   I just realized that I am thirty-four and I can count the good experiences on one hand.  The thought of hope that one of those encounters is in my future is reassuring.  It was just hard for me to hit such a huge psychological wall only eight days after so much amazing and pertinent information has been released, referring to the  2017 International Classification of the Ehlers-Danlos Syndromes.  Then my first appointment to be with someone so clearly not up to date on current information regarding Ehlers-Danlos or how it effects the body.  There were many other glaring inconsistencies, and I literally almost walked out, but thought TOP deserved my full attention, as I wanted to have theirs.  

While I realize the majority of this article is negative.  So negative right.   It's just an experience, a lesson.  So many bad experiences.  What key intent am I lacking, am I missing?  I feel like I've been working so hard to be aware of my emotional responses and how they effect and aggravate an interaction.  I almost feel like I should record my interactions to learn.  What do you do in these situations?  

Logic - Brush it off, focus on the positive experiences.  Go plant sniffing in the garden (serious though).  

Brain - &#^@)$(@^$)!_!^$*(#)+#@*@) <---- do you see the accidental bunny?


See there's a silver lining in everything.  Don't let poopy situations get you down.  Maybe I'm just not good at self-advocating.  I know I shut down easily once a conversation starts to go south.  My point is your general "don't let one bad apple" bit, there are more get it right?  While you also have to not be the bad apple yourself, sometimes relations won't work out in the first place, and that may lead you down the road you need to be on.  Keep looking for those things that nourish your soul.  Hitting a wall doesn't mean it's the end by any means.  Chronic pain, depression, and multi-systemic disorders are a labyrinth.  Hitting one wall means you need to go in another direction to get through.


American Journal of Medical Genetics newly released informational Part C (Seminars in Medical Genetics) general overview.

This freshly released collaboration of research articles, compiling hundreds of pages of research driven encapsulations of the varying manifestations from psychiatric/psychological aspects to chronic fatigue in hypermobile types.  I have read and elaborated on nine of these articles, listed below.  For the full 2017 EDS International Classification brought to you by the Ehlers-Danlos Society click here!

A highly suggested if not obligatory reading if you have any type of Ehlers-Danlos.  In fact these should be emailed by diagnosing physician immediately after diagnoses so that patients can be equally present in their management of symptoms.  As someone who was diagnosed 19 years after I first gathered the courage to ask a doctor for help, these studies have greatly helped restore my hope that those being diagnosed, treated, enduring, cared for, and altogether afflicted by the many draining, and multi-systemic, comorbidities are being taken seriously on a larger scale.  Hopefully our children will not have to endure symptoms that rearrange our schedules at whim.  

EDS is difficult enough to navigate, at least with the knowledge of these articles we as patients have the best tools to help us manage our symptoms until we have more effective options.

Each article is a carefully articulated synopsis of all of the research available, in each respective category.  You can check my quick recap below each of the clickable links.

You can click on any of the following titles to be taken directly to their articles from the Ehlers Danlos Society.  Thank you Ehlers Danlos Society for facilitating the release of these documents for us, and for creating the amazing "Your Questions Answered" brochure about the 2017 EDS International Classification, which you can also find here.

I implore anyone diagnosed with cEDS, vEDS, hEDS, and any of the rarer or associated Ehlers-Danlos Syndromes, care givers, and loved ones to make time to read through each and every one of these articles.  The information is invaluable, and will help you be better prepared as a patient when it comes to providing and receiving the best care available.


Hypermobile Ehlers-Danlos Syndrome (a.k.a. Ehlers-Danlos Syndrome Type III and Ehlers-Danlos Syndrome Hypermobility Type): Clinical Description and Natural History

Brad Tinkle, Marco Castori, Britta Berglund, Helen Cohen, Rodney Grahame, Hanadi Kazaz, and Howard Levy
 One of the laregest of the articles, this is the best intro to hEDS .  From clinical description to quality of life and a wide overview of the varying comorbidities, these 22 pages are full of vital information to help you guide your healthcare plan of action. 

Ehlers-Danlos Syndrome, Classical Type

Jessica M. Bowen, Glenda J. Sobey, Nigel P. Burrows, Marina Colombi, Mark E, Lavallee, Fransiska Malfait, and Clair A. Francomano
 A wonderful breakdown, and literary map, of the genetic sequencing that unfolds into the physical and invisible traits of cEDS.  Even if you do not have this type, the information here is so useful in understanding the characteristics of COL5A1 and COL5A2 mutations which embody cEDS.  

Cardiovascular Autonomic Dysfunction in Ehlers-Danlos Syndrome -- Hypermobile Type

Alan Hakim, Chris O'Callaghan, Inge de Wandele, Lauren Stiles, Alan Pocinki, and Peter Rowe
 A great overview of the cardiac involvement  within the Ehlers-Danlos Syndromes.  I love that this complation takes you from the clinical history to the management and treatment of POTS, OH, and OI.

Oral and Mandibular Manifestations in the Ehlers-Danlos Syndrome

John Mitakides and Brad Tinkle
 Another great overview of the many different manifestations linked to the oral and mandibular regions.  TMJ, CCI, TMD, tissue fragility and treatment therapies are explained to great detail.     

Psychiatric and Psychological Aspects in the Ehlers-Danlos Syndromes

Antonio Balbuena, Carolina Baeza-Velasco, Andrea Balbuena-Cabre, Guillem Pailhez, Hugo Critchley, Pradeep Chropra, Nuria Mallorqui-Bague, Charissa Frank, and Stephen Porges
 I was elated to see that not only was this addressed independently, but that the care and attention to detail in the article were definitely in tact.  I absolutely believe the connection between the Ehlers-Danlos Syndromes and depressive, and psychological conditions deserves our full attention.  We cannot improve our quality of living, or the way we engage our health management without addressing this.  There are three great diagrams which outline the cycles of eating disorders, the "Roles of Mental Health Professionals in the Management of JHS/hEDS," and neuroconnective model used to illustrate how important the implementation of a multidisciplinary team is in symptom management. 

Chronic Fatigue in Ehlers-Danlos Syndrome -- Hypermobile Type

Alan Hakim, Inge de Wandele, Chris O'Callaghan, Alan Pocinki, and Peter Rowe
 The dreaded CFS, destroyer of motivation and most things fun.  Another very common concern across the Ehlers-Danlos Syndromes.  A great review of the MANY intricacies of CFS, and how to engage recovery effectively.  

Gastrointestinal Involvement in the Ehlers-Danlos Syndromes

Asma Fikree, Gisela Chelimsky, Heidi Collins, Katcha Kovacic, and Qasim Aziz
 GI issues are rather universal among the Ehlers-Danlos Syndromes, and I thoroughly appreciate the points they eluded to about the importance of nutrition, and the decreased quality of living amongst those with overlapping GI symptoms.  Another imperative read which has explained so much of my youth.

Pain Management in the Ehlers-Danlos Syndromes

Pradeep Chropra, Brad Tinkle, Claude Hamonet, Isabelle Brock, Anne Gompel, Antonio Balbuena, and Clair Francomano
 I was most excited to read this article.  Another great collection of undeniably pertinent information when it comes to the mechanics of chronic pain and the methods most effective to manage your pain.  There is a great table of the types of pain in hEDS, and a wide range of alternative therapies I hope my MDT will be open to trying.  I will say, however I was disappointed that while opiods were illustrated as an ineffective long term treatment option, I felt the issue of pharmacogenetics should have been addressed as well.  This may be a personal issue, however I have heard medication intolerances echoed among patients and feel this would have been a great place to address this.

Orthopaedic Management of the Ehlers-Danlos Syndromes

William B. Ericson Jr., and Roger Wolman
 For those of you with frequent, or even incessant subluxations, and full dislocations this is a great window into the disconnect you may observe when visiting your orthopedist.  There are some valuable pointers on how to make the most of your visits, when pain management is at its' most critical for those greatly affected by severe joint laxity and instability.

Our time is now.  If you would like me to provide a brief synopsis of the remaining articles, please leave a comment below.