Whakatane, Eastern Bay of Plenty

New Zealand

© 2018 by Matthew Preston

Ehlers-Danlos Syndromes

Ehlers-Danlos Syndromes

Dr Matthew Preston has a special interest in Ehlers-Danlos Syndromes. He is able to offer general advice to doctors and other health care professionals. He is not able to offer direct, personal advice to patients. In the future he may be able to offer more formal consulting in a clinical setting. No formal EDS clinic is available yet. Patients needing information are encouraged to visit the links below and make your doctor aware of this website.

Hypermobility and The Ehlers-Danlos Syndromes - Quick Facts - for Health Professionals

This link is a short article giving the Quick Facts of EDS for busy Health Professionals and for EDSers who need some factual information.

  • If you are someone with EDS or who thinks you may have EDS, this is a great article to give to your doctor (as a link or printout) so that they can get a quick overview of EDS to better be able to help you.

  • If you are a doctor, physio etc who needs to get a handle on EDS basics, this is for you.

 

I wrote it to give the important basics with some useful links to additional information.

FOR MEDICAL PROFESSIONALS:

 Hypermobility and Ehlers-Danlos Syndromes (EDS) - New Zealand Guideline 2019

American Journal of Medical Genetics - 17 articles in special supplement on Ehlers-Danlos Syndromes (March 2017)

ER Safety Tips for Ehlers-Danlos Syndrome Patients

Bay of Plenty District Health Board (BOPDHB) Grand Round - Ehlers-Danlos Syndrome - June 2018

The Ehlers-Danlos Society (USA)  ​
RCGP (Royal College of GPs) - The Ehlers-Danlos Syndromes Toolkit

Assessing Joint Hypermobility - video showing how to do this properly

Hypermobile EDS Diagnostic Checklist

 

Just GAPE tool: A great, easy to remember tool to remember the major features of EDS:

JUST   Joints (and U/Other soft tissues)

G        Gut

A        Allergy/Atopy/Autoimmune

P        Postural symptoms

E        Exhaustion 

FOR PATIENTS:

Ehlers-Danlos Society New Zealand

New Zealand EDS Online Support Group - Loosely Speaking 

American Journal of Medical Genetics - 17 articles for Non-Experts - in special supplement on Ehlers-Danlos Syndromes (March 2017)

Notes from Ehlers-Danlos Society Conference in Sydney, Dec 2018

Wallet card for patients - https://ehlers-danlos.com/wp-content/uploads/walletcard.pdf