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.
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.
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.
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.
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.
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.
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.
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.
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.
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.