General Information
Why diagnose EDS? Hypermobility Disorders — An Update for Clinicians By Alan Hakim, March 16, 2017
Ehlers Danlos syndromes (EDS) are a group of heritable connective tissue disorders that impact individuals of all ages & genders. Frequently misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or various psychosomatic illnesses, EDS affects nearly every body system since connective tissue is what holds the body together like glue. Many of those who have EDS experience daily pain, excessive fatigue, increased bleeding, and they have overly flexible joints which can lead to joint dislocations, as well as many other seemingly unrelated symptoms. Support and resources for medical professionals and patients affected by EDS remains limited. Sadly, EDS frequently goes undiagnosed for many years causing patients and medical professionals unnecessary suffering. Diagnosis is validating and empowering for patients, their loved ones and medical professionals! Early diagnosis enables proper treatment strategies, fewer unnecessary medical visits, and prevents injury.
What are the Ehlers-Danlos Syndromes?– Online Article, Ehlers-Danlos Society, 2018
Quick Reference Guide about EDS Subtypes – PDF File, Linda Bluestein, MD, November 2017
The 2017 international classification of the Ehlers–Danlos syndromes – Online Article, American Journal of Medical Genetics, Volume 175, Issue 1, March 2017, 8-26.
Mast Cell Activation Disorder (MCAD) and EDS
Mast Cell Disorders in Ehlers-Danlos Syndrome – Seneviratne SL, Maitland A, Afrin L. 2017. Mast cell disorders in Ehlers–Danlos syndrome. Am J Med Genet Part C Semin Med Genet 175C:226–236.
Mast Cell Activation Disorder – Webinar presentation (with PDF Handout) on EDS’s co-occurring condition, Anne Maitland, MD, PHD., September 19, 2017.
What is Mast Cell Activation Disorder (MCAD)? – Powerpoint Presentation, Anne Maitland, MD, Ph.D., September 19, 2017.
EDS with other involvements
Gastrointestinal involvement in the Ehlers–Danlos syndromes – Online Article, American Journal of Medical Genetics, Volume 175, Issue 1, March 2017, 181-187.
Hypermobile Ehlers-Danlos Syndrome (hEDS)
Diagnostic Criteria for Hypermobile Ehlers-Danlos Syndrome (hEDS) – PDF File, Ehlers-Danlos Society, 2018
A Framework for the Classification of Joint Hypermobility and Related Conditions – Online Article, American Journal of Medical Genetics, Volume 175, Issue 1 version of online record: 1 Feb. 2017, 148-157.
Measurement properties of clinical assessment methods for classifying generalized joint hypermobility—A systematic review – Online Article, American Journal of Medical Genetics, Volume 175, Issue 1, March 2017, 116-147.
Cardiovascular autonomic dysfunction in Ehlers–Danlos syndrome—Hypermobile type – Online Article, American Journal of Medical Genetics, Volume 175, Issue 1, March 2017, 168-174.
Chronic fatigue in Ehlers–Danlos syndrome—Hypermobile type – Online Article, American Journal of Medical Genetics, Volume 175, Issue 1, March 2017, 175-180.
Medication Metabolism
Pain Management
Pain Management in Hypermobility Disorders: Frequently Missed Causes of Chronic Pain – Linda Stapleford Bluestein, MD., Topics in Pain Management: July 2017 – Volume 32 – Issue 12 – p 1–10
Managing Your Pain Presentation with accompanying Resources for Managing Your Pain, PDF Handout, Linda Stapleford Bluestein, MD., Wausau, Wisconsin YMCA, 2017.
Treatment Options
Orthopaedic management of the Ehlers–Danlos syndromes – Pradeep Chopra, Brad Tinkle, Claude Hamonet, Isabelle Brock, Anne Gompel, Antonio Bulbena, Clair Francomano, Pain management in the Ehlers-Danlos syndromes, American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 2017, 175, 1, 212
The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with joint hypermobility syndrome/hypermobile Ehlers Danlos syndrome – Online Article, American Journal of Medical Genetics, Volume 175, Issue 1, March 2017, 158-167.
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