American Journal of Medical Genetics March 2017 EDS IssueThese articles covering a wide range of treatment strategies are free to download for a limited time.
Download the PDFs from the table of contents.
- Chronic Pain Partners offers an online learning session on the 1st and 3rd Wednesdays of each month at 7:30 pm, EST. The session typically lasts approximately 1.5 – 2 hours with the majority of this time devoted to a live Q & A. Sessions are often recorded and posted on their site.
- The Ehlers-Danlos National Foundation (ednf.org) EDNF now has their own webinar series. The inaugural webinar in October 2014 was "Connecting the Dots Between EDS and POTS", featuring Dr. Peter Rowe & Dr. Satish Raj.
Practical SuggestionsTips (life hacks) for EDS patients – many of these came from our local members and some were collected from elsewhere online.
Medical Literature - Articles, Chapters, and Abstracts
American Journal of Molecular Genetics
- Knowledge, Assessment & Management of EDS Among Physiotherapists by Lies Rombaut et al.
- Generalized Joint Hypermobility, Joint Hypermobility Syndrome and Ehlers–Danlos Syndrome, Hypermobility Type (Introduction) by Marco Castori AND Marina Colombi
- Differential Diagnosis by Marina Colombi, Chiara Dordoni, Nicola Chiarelli, AND Marco Ritelli
- Head and Cervical Pain by Marco Castori et al.
- Neuromuscular Differential Diagnosis by S. Donkervoort et al.
- The Role of Narrative Medicine in the Management of EDS by Isolbel Knight
- Spectrum of Mucocutaneous Manifestations by Marco Castori et al.
- G.I. and Nutrition by Marco Castori, Silvia Morlino, Giulia Pascolini, Carlo Blundo, and Paola Grammatico
- Neurodevelopmental Attributes by Giulia Ghibellini, Francesco Brancati, and Marco Castori
- Variability in Developmental Coordination Disorder: AD/HD, Atypical Swallowing by Claudia Celletti et al.
- Osteopathy and Ehlers-Danlos Syndrome Advice for practitioners
- The Intractable Pain Patient’s Guide to Pain Free Hours & Low Pain Days
- Ehlers-Danlos Syndrome, Hypermobility Type by Dr. Howard Levy. This 24 page article in Gene Reviews, Oct. 22, 2004, covers diagnostic criteria and management of the condition.
- Joint Hypermobility Handbook: A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome by Dr. Brad Tinkle. Two free chapters (1. Joint Laxity and 2. Ehlers-Danlos Syndromes) are available by e-mail request by filling out the 3rd box on right menu.
- Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome by Lawrence Afrin (pp. 155-232) - is a chapter made freely available from the book Mast Cells: Phenotypic Features, Biological Functions and Role in Immunity. The entire table of contents, with an abstract of each chapter is also available, just click on each chapter link.
- Chronic Pain Partners – Offers bi-monthly webinars, surveys, products, and valuable information.
- EDS Today – An organization with the goal of bringing education, awareness and hope to those suffering with Ehlers -Danlos Syndrome.
- Center for Ehlers-Danlos Syndrome Alliance
CEDSA offes general and child centric information as well as a wallet ID card with patient registry linking medical providers to information about your specific type. This can be especially helpful for protecting parents from child abuse allegations.
- TCAPP.org – The Coalition Against Pediatric Pain has resources for children and their parents. We list it here because chronic pain is one of the most troublesome manifestations of EDS.
- DINET.org – Dysautonomia Informaion Network is included here because many patients with EDS also suffer from dysautonomia (dysregulation of the autonomic nervous system).