In the News

 

Click on the links below to access news about Rare Disease or Ehlers-Danlos.

The Tangled Web: Unraveling the connection between Dystonia and Hypermobility, Dystonia Recovery Program Team, Jan. 2026

Dystonia in EDS, by David Harris, Oct. 2024

Is Pelvic Congestion Syndrome linked to Ehlers-Danlos Syndrome and POTS?, by David Harris  Oct. 2024

Tackling a Connective Tissue Disorder using Nerve Stimulation, by Ron Thorn  June 6, 2023

May-Thurner syndrome in patients with postural orthostatic tachycardia syndrome and Ehlers-Danlos syndrome: a case series, Apr. 9, 2022​
 

Looking out for Lipedema Landmines, by Karen Ashforth

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Should There be an Increased Focus on Lipedema, the Lymphatic System, and Adipose Tissue Fibrosis in Ehlers-Danlos Syndrome, Fibromyalgia and ME/CFS?, by Jeffrey Lubell  Dec. 5, 2021

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Impaired Lymphatic Drainage and Interstitial Inflammatory Stasis in Chronic Musculoskeletal and Idiopathic Pain Syndromes: Exploring a Novel Mechanism, Brian Tuckey  John Srbely  Grant Rigney  Meena Vythilingam Jay Shah Aug. 23, 2021

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Psychosocial and Functional Aspects of Chronic Illness and Disability - pdf

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MUSC researchers announce gene mutation discovery associated with EDS

by Leslie Cantu July 14, 2021

 

Hypermobile Ehlers-Danlos Syndrome: An update on Therapeutic Approaches for pain management

by Jeffrey J. Bettinger, PharmD and James Kelley, MD July 7, 2021

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EDS and Puberty

by Brian Murphy, PhD Feb. 4, 2021

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Study offers potential targets for treating people with Ehlers-Danlos syndrome.

by Reviewed by James Ives, M.Psych. (Editor) June 4, 2020

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EDS and Tight Muscles: If my joints are so loose, why do I feel so tight?

by Mindy Nagel, PT, DPT, OCS May 21, 2020 

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Pathology: Part II (Could PEM be a symptom of neural strain?) 

by Jennifer Brea  Sept. 4, 2019

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#MillionsMissing Is Raising Awareness Of This Chronic Illness Through Social Media

by James Hale May 12, 2018

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Visceroptosis (displacement of various abdominal organs from their normal positions) and the Ehlers-Danlos Syndrome

by Stephen Kucera, Stephen N. Sullivan Nov. 8, 2017

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Visceroptosis and the Ehlers-Danlos Syndrome

by Stephen Kucera, Stephen N. Sullivan Nov. 8, 2017

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Psychiatric and Psychological Aspects in the Ehlers–Danlos Syndromes 

American Journal of Medical Genetics, 2017

 

Ehlers-Danlos Syndrome: An Emerging Challenge for Pain Management

by Forest Tennant MD DrPH September 2017

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One of the biggest myths about Chronic Fatigue Syndrome just got debunked. 

by Fiona MacDonald

Feb. 22, 2017

 

Venous Stent Procedure Providing Relief to Some Ehlers-Danlos Patients

University of Virginia Health System

Mast cells and histamine are triggering the NF‐xB‐mediated reactions of adult and aged perilymphatic mesenteric tissues to acute inflammation, Research Paper November 21, 2016
 

Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder

by Yael Gazit, M.D, Giris Jacob, M.D, and  Rodney Grahame, M.D.

Oct. 31, 2016

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One Gene Mutation Links Three Mysterious, Debilitating Diseases

by, Kate Horowitz Oct. 17, 2016

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NIH scientists uncover genetic explanation for frustrating syndrome

Oct. 17, 2016

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2 Types of Pain Ehlers-Danlos Syndrome Causes on a Daily Basis

by, Meredith Grimsby Oct.5, 2016

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What 1989 and the Golden Girls Tell Us About Medicine Today

by David Michael Connor Sept. 23, 2016

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Small fiber neuropathy is a common feature of Ehlers-Danlos syndromes

July 12, 2016

 

Cranio-cervical Instability in Patients with Hypermobility Connective Disorders, by Fraser C. Henderson Sr. M.D, April 6 2016

 

About Histamine Intolerance

by Eva - Blog: the Histamine Pirate

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Who Took My Collagen and How Can I get it Back?

by Rebecca Booth, HuffPost, updated Jan. 4, 2016

 

To the person with a chronic illness who feels like a burden

by Lindsey B, the Mighty, Dec. 1, 2015

 

To the Doctors of Chronic Illness Patients

by Catherine Richardson, the Mighty, Nov. 4, 2015

 

Cure the Process 2: One year later

Everylife Foundation, October, 2015

 

Celebrities and crowdfunding aid Hollywood family devastated by rare disease

by Carina Storrs, Special to CNN, June 12, 2015

 

A Letter to the Me who was Terrified of Our Diagnosis

by Ali Cummins, the Mighty, Nov. 5, 2014

 

In Hopes of Fixing Faulty Genes, One Scientist Starts with the Basics.

by Joe Palca, Oct. 13, 2014

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Neurological manifestations of Ehlers-Danlos syndrome(s): A review

by Marco Castori andNicol C. Voermans, Oct. 6, 2014

 

Living with Ehlers-Danlos Syndrome: Sometimes I just don't have it in me to be Inspirational.

by Michael Bihovsky, May 29, 2014

 

Autonomic Symptom Burden in the hypermobility type of EDS.

May 13, 2014

 

Have Pain? Are you crazy? Rare Diseases Pt. 2

by Judy Stone Feb. 18, 2014

Inflammation-induced lymphangiogenesis and lymphatic dysfunction, by Shan Liao and  Pierre-Yves von der Weid Jan. 22, 2014​

Sleep-Disordered Breathing in Ehlers-Danlos Syndrome: A Genetic Model of OSA, American College of Chest Physicians, Nov. 2013

 

Hormones & Hypermobility

by Paul Gardener June 9, 2013

 

Five Tough Choices You Face when Chronically Ill or in Pain

by Toni Bernhard via ProHealth, March 22, 2013

 

A New Syndrome:Eosinophilic Esophagitis with connective tissue disorder (EoE-CTD) 

April 22, 2013

 

Researchers to develop new diagnostic tools and treatments for people with rare diseases

January 25, 2013

 

Second Skin Suit Gives New Lease of Life to Toddler whose Joints Dislocated Every Time she Played.

by Daily Mail Reporter, July 27, 2010

 

Effect of estrogen on tendon collagen synthesis...

Journal of Applied Physiology, April 1, 2009

 

Evaluation of the work-related disability in people affected by Ehlers-Danlos Syndrome

 

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