Los Angeles, California, 90010 (1800PressRelease.com) May 4, 2010 — Ehlers-Danlos syndrome (EDS) is a group of inherited connective tissue disorders caused by various defects in the synthesis of collagen; characterized by articular (joint) hypermobility, skin extensibility and tissue fragility. EDS is known to affect men and women of all racial and ethnic backgrounds. Each of the six identified types of EDS is thought to involve a unique defect in connective tissue, although not all of the genes responsible for causing EDS have been found. Current research estimates incidence at one in 2,500 to 5,000. Many remain undiagnosed or misdiagnosed until much damage has occurred to the to sufferer or sadly, after a fatal event.

Ehlers-Danlos Awareness Month began in 2005 when members of the Ehlers-Danlos National Foundation (EDNF) were polled and May was determined as Awareness Month. Illinois became the first state to proclaim EDS Awareness Month and many other states have joined in developing awareness and advocacy for this disorder.. Additionally, many of those with EDS have enacted activities to highlight EDS to the greater population and the medical community. An example of this is an upcoming motorcycle race in Kansas.

This year, EDNF is pleased to share its publication, EDS in Practice, to enable easier diagnoses and treatment of EDS. This pdf publication gives doctors and patients the tools they need to identify, diagnose and treat the EDS patient. It includes a pediatric checklist to help medical professionals and families identify connective tissue disorders through a comprehensive set of symptoms in various body systems. Additionally, it includes a checklist noting the screening and management for adults with EDS through both body systems and life phases. It also provides information on each of the six major types of EDS and its genetic information.

For 25 years EDNF has led the way for the EDS community, providing a network of support and outreach and becoming the “gold standard” for EDS information and resources. This publication provides long needed information for the medical community to use in screening children and adults for EDS. The pdf for EDS in Practice is available at www.EDNF.org.

Developed with EDNF’s Professional Advisory Network, especially Nazli McDonnell, MD, PhD (Pediatric Checklist) and Howard Levy, MD, PhD (Adult Checklist), this publication is based on the current research of these prominent medical professionals.

About Ehlers Danlos National Foundation - EDNF was founded in 1985 by Nancy Rogowski. Today EDNF has a vital and dedicated membership, over 13,000 on our mailing list, and a nationwide network of members and support groups that serves a national and global EDS online community. EDNF is a founding member of the International Ehlers-Danlos Association Network which was created in 1997 to provide educational material and to support research on an international level. EDNF’s vision is to lead the search for knowledge about EDS and build a community of people who work together to effect change. The EDNF Mission is to generate resources for those affected by EDS by creating and distributing accurate information, providing a network of support and communication and fostering and funding research. EDNF is a registered 501(c)(3). For more information or to support the conference please visit www.ednf.org.


Organization: Ehlers Danlos National Foundation

Contact Person: Cynthia Lauren
City/Town: Los Angeles
State, Zip Code: California, 90010
Phone Number: (213) 368-3800

Website: http://www.ednf.org

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