Ehlers-Danlos Syndrome (EDS) Resources

*This page is still in process*

Ehlers-Danlos Syndrome (EDS) Resources

Ehlers-Danlos syndrome can be overwhelming to learn about, especially when newly diagnosed. This page is a list of resources that were recommended to me when I was first diagnosed, along with others I found on my own.

Chronic Wholeness EDS Pinterest Board

Categories:

Websites

Peer reviewed articles

Articles

Books

Blogs

Facebook pages

Websites

The Ehlers-Danlos Society  

https://www.ehlers-danlos.com/current-research-projects/  

http://www.chronicpainpartners.com/ 

https://www.chronicpainpartners.com/webinars/

Peer-reviewed articles

EDS basics

March 2017 American Journal of Medical Genetics table of contents

EDS types

2017 Classification

Hypermobile EDS

Classical EDS

Classical Ehlers-Danlos Syndrome Caused by a Mutation in Type I Collagen

Vascular EDS

vEDS diagnosis

Intestinal Perforation in Children

Spontaneous pneumothorax and hemothorax

Bowel perforation

Managing bowel complications

Rare types

Classical Like EDS

Expanding the Clinical and Mutational Spectrum of Recessive AEBP1-Related Classical-Like Ehlers-Danlos Syndrome

Genes

COL5A1
New variants in COL5A1 gene among Polish patients with Ehlers-Danlos syndrome: analysis of nine cases
Full text of above

COL5A2

COL3A1
Atypical COL3A1 variants (glutamic acid to lysine) cause vascular Ehlers-Danlos syndrome with a consistent phenotype of tissue fragility and skin hyperextensibility

COL1A1
A family with Classical Ehlers-Danlos Syndrome (cEDS), mild bone fragility and without vascular complications, caused by the p.Arg312Cys mutation in COL1A1

TNXB

Mutation in TNXB leads to EDS

EDS Comorbidities

MCAS

EDS and treatment precautions

Safety of endoscopy in heritable connective tissue disorders

Nutrition in EDS
A novel therapeutic strategy for Ehlers-Danlos syndrome based on nutritional supplements

Gastrointestinal involvement in the Ehlers–Danlos syndromes
Gastrointestinal disorders in joint hypermobility syndrome/Ehlers‐Danlos syndrome hypermobility type: A review for the gastroenterologist
Gastrointestinal and Nutritional Issues in Joint Hypermobility Syndrome/Ehlers–Danlos Syndrome, Hypermobility Type

EDS and hips

http://www.arthroscopyjournal.org/article/S0749-8063(15)00497-1/fulltext

Articles 

Nutritional, Therapeutic Strategy for Ehlers–Danlos SyndromeDiet Changes for EDS (Ehlers-Danlos Syndrome)
Ehlers Danlos Syndrome Supplements

Books

Hypermobility Handbook by Brad Tinkle

Living Life to the Fullest withEhlers-Danlos Syndrome by Kevin Muldowney

Blogs

Oh TWIST: http://ohtwist.com/

My Stripy Life:  http://mystripylife.com/ 

Cusack Family:  https://ouredsjourney.weebly.com/story.html

Nasar Nutrition

Facebook Pages

https://www.facebook.com/TCMN.EDS/

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