| EDS Links
Ehlers-Danlos
National Foundation
The Ehlers-Danlos National Foundation (EDNF) was founded in
1985 by Nancy Hanna Rogowski. EDNF creates resources for those affected by
the connective tissue disorder Ehlers-Danlos Syndrome. They create and distribute
accurate information, provide a network of support and communication, and
foster and fund research.
Ann Arbor EDNF
Local group based in Ann Arbor, Michigan
(west of Detroit MI /
north of Toledo OH)
Overviews of Ehlers-Danlos
Syndrome
What
is Ehlers-Danlos Syndrome?
What are the Types of EDS?
both articles written in lay-person's terminology
How is EDS diagnosed?
diagnostic criteria written in medical terminology
Ehlers-Danlos
Syndromes: Revised Nosology, Villefranche, 1997
by Peter Beighton, Anne De Paepe, Beat Steinmann, Petros Tsipouras, Richard J. Wenstrup
published in the American Journal of Medical Genetics, 1998
Ehlers-Danlos
National Foundation – Medical Professionals site
A comprehensive repository of information on EDS, compiled and sanctioned by the EDNF Professional Advisory Council – overviews of each type, diagnostic criteria, photos, management, Q&A, and journal article abstracts.
Comprehensive Reviews of EDS Types
Summary, Diagnosis, Clinical Description, Management, Genetics, etc.
Ehlers-Danlos Syndrome, Classic Type
by Richard Wenstrup, MD, & Anne De Paepe, MD, PhD;
updated April 2006
Ehlers-Danlos Syndrome, Hypermobility Type
by Howard P Levy, MD, PhD;
posted October 2004
Ehlers-Danlos Syndrome, Vascular Type
by Melanie G Pepin, MS, CGC, & Peter H Byers, MD;
updated June 2006
Ehlers-Danlos Syndrome, Kyphoscoliotic Form
by Richard Wenstrup, MD, & Heather N Yeowell, PhD; updated July 2005
Additional Information About
EDS
Ehlers-Danlos
National Foundation – Literature & Media
Educational programs, CD-ROMs, booklets, newsletter, and informational leaflets.
Ehlers-Danlos
National Foundation – Living with EDS
Ehlers-Danlos
National Foundation – Dealing with Doctors
Articles on learning to live with EDS and dealing with doctor/patient relationships.
Canadian
Ehlers-Danlos Association – information page
EDS information, articles, medical journal abstracts, research, self help information,
and personal stories.
Medical Devices
 Silver
Ring Splint Company
Attractive splints, designed to effectively control hyperextension
and support instability of finger joints in patients with EDS, arthritis,
and other chronic conditions.
|
 EZ
Chair
A revolutionary new wheelchair – effortlessly propelled
by foot pedals, made of lightweight aluminum, folds to fit easily in the
trunk of a car. Gives you mobility without atrophy, providing safe, comfortable
freedom, while increasing circulation, strength, and ability. [Note: The company that manufactured these chairs appears to have gone out-of-business. It is uncertain whether this item still available through any other sources.]
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Michiana EDNF website designed by Smack
Dab Design.
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