Ehlers Danlos Syndrome

 

Ehlers Danlos Syndrome

EDS is an inherited condition that affects the connective tissues in the body.  Connective tissue is responsible for supporting and structuring the skin, blood vessels, bones and organs. 

 



Research

 


2013 TCAPP Think Tank Videos


Title: Ehlers-Danlos Syndrome:  A Multi-dimensional Disorder

Author: Clair A. Francomano, M.D.
Harvey Institute for Human Genetics
Greater Baltimore Medical Center

This lecture, given by one of the world-renowned geneticists of Ehlers-Danlos, discusses the various types of

Ehlers-Danlos Syndrome and the systems that can be affected. These include disorders of the musculoskeletal, dermatological, neurological, cardiovascular, gastrointestinal and immunological systems. It also goes into the secondary pain conditions that can occur due to Ehlers-Danlos Syndrome which include various types and genres of headaches, muscle pain, and neuropathic pain.


Title: Conversion Disorder & Somatization Disorder

Author: Richard Barnum, M.D.
Private Practice of Psychiatry and Previously Forensic Psychiatrist for the State of Massachusetts.

This lecture addresses the true definitions of Conversion Disorder and Somatization Disorder in the past DSM and the current DSM and how kids with Ehlers-Danlos are commonly misdiagnosed with these psychiatric disorders. It further explores the actual psychological support needed by patients with Ehlers-Danlos Syndrome and how that help can be impeded with misdiagnosis.


Title: Pediatric Pain 2013 …. Connecting the Dots

Author: Pradeep Chopra, M.D.

Assistant Clinical Professor at Brown Medical School and Director of Pain Management Center of Rhode Island

This lecture addresses the common pain syndromes seen with Ehlers-Danlos Syndrome, mitochondrial disorders and the overlapping of RSD/CRPS. It discusses the various effects to the body (such as dystonia, muscle spasms, gastrointestinal issues, etc.) and the different medical options out there both off-label and known.


Title: Neurosurgical Problems with Ehlers-Danlos Syndrome

Author:
Fraser Cummings Henderson, Sr. M.D.
The Metropolitan Neurosurgery Group

This lecture addresses the various mechanical stressors brought on by

Ehlers-Danlos Syndrome and possible neurosurgical interventions that may alleviate some of these stressors. It discusses the mechanical abnormalities such as Cranio-vertebral instability, Chiari, Atlanto-axial instability, Vertebral Instability, Occult Tethered Cord, Jugular venous occlusion, and much more. It then goes into the details of possible surgical solutions to the complicated mechanical stressors.


Title: How Ehlers-Danlos Syndrome Affects Digestion, Nutrition, Bowel Function, and Gut-Related Immune Function

Author: Heidi A. Collins, M.D.

Heidi A. Collins is a Physiatrist with a Special Interest in Ehlers-Danlos Syndrome as both she and her children are affected by it

This lecture addresses the fact that the entire gastrointestinal system is affected by Ehlers-Danlos Syndrome. It discusses how the connective tissue abnormalities can make the gastrointestinal tract sluggish, painful, leaky, and inflamed. How the autonomic dysfunction seen with Ehlers-Danlos can cause motility disorders and how structural abnormalities can affect absorption, trigger the immune system and cause a cascade of events of inflammation and allergies.


Title: Ehlers Danlos Syndrome and Dysautonomia

Author: Jean Teasley, M.D.
Neurologist and Palliative Care Specialist at Virginia Commonwealth Hospital

This lecture addresses the dysautonomia conditions seen very commonly with Ehlers-Danlos Syndrome such as gastroparesis, orthostatic intolerance (OI), IBS, headaches, and many more. It also discusses the various treatments for each disorder and why they might help. Finally, the possible link and overlapping signs of dysautonomia and Ehlers-Danlos Syndrome and mitochondrial disorders is discussed.