Saving Lives through May Awareness

One out of every five-to-fifteen thousand Americans has a little-known condition lurking within their body. It is called Ehlers-Danlos Syndrome (EDS) and the goal for Ehlers-Danlos Syndrome Network CARES, Inc. during the month of May is to alert everyone to this condition.

For most people, it comes as a shock when physicians make statements like: "Your daughter's painful joints and frequent dislocations are because she has Ehlers-Danlos Syndrome."

"Your son's life-threatening arterial rupture is a direct result of Vascular Ehlers-Danlos Syndrome!"

Shannon Rose, national spokesperson for Ehlers-Danlos Network CARES, Inc., and his family learned the ins-and-outs of EDS first hand. As a twelve-year-old boy, Shannon’s arms were paralyzed; he has lived with constant pain and discomfort since his diagnosis when he was two-years old.

The culprit was Ehlers-Danlos Syndrome.

"Everyone should at least be aware of EDS," stated Shannon. "That’s a good place to start and that’s why Ehlers-Danlos Syndrome Network CARES, Inc. is pleased to be a part of EDS Awareness Month in May."

To kick off an educational initiative this month, Ehlers-Danlos Syndrome Network C.A.R.E.S. has proudly unveiled a series of Diagnostic Posters. These posters feature a poster child with characteristics and symptoms of each of the main types of EDS.

The posters are being placed in ER's, pediatric and genetic clinics and other medical centers with the hope that those who are struggling with the symptoms of EDS will recognize EDS and find the proper diagnosis.

These posters are available for download in PDF format by visiting the EDS website at www.ehlersdanlosnetwork.org

Over 50 core leaders have worked throughout the USA to have the month of May for "EDS Awareness Month" officially proclaimed in their respective states. Currently, Maine, Iowa, Georgia, Nebraska, Wisconsin, Utah, Ohio, Nevada, California, Connecticut and Tennessee have issued formal Proclamations.

In addition, these teams have planned a variety of events and fundraisers through May to help fund the life-saving research now underway by at Johns Hopkins by Dr. Hal Dietz.

On May 16th, The 2010 Cleveland Marathon in Cleveland Ohio will take place with Ehlers-Danlos Syndrome Network C.A.R.E.S. as an official charity partner. Additional fundraisers including dinners, garage sales will also take place to fund this valuable research.

Donations to fund this research can be made at www.ehlersdanlosnetwork.com
by clicking on the "Donation" tab.


100% of all donations designated for research will be placed in this fund.


Ehlers-Danlos Syndrome Network CARES is also pleased to introduce their new "Designer Awareness Pins" by artist Lucinda. Each pin is different and unique. A limited number of "Memorial" pins can be specifically requested to honor someone whose life has been taken by EDS.

These Awareness pins, buttons, bracelets and other items can be ordered by visiting the STORE DOOR link at www.ehlersdanlosnetwork.org


EDS Network Cares is a NON-PROFIT ORGANIZATION established and driven by EDS patients and family members who share a belief in, and a passion for research and education.

For interview opportunities with Shannon Rose, national spokesperson of Ehlers-Danlos Syndrome Network CARES, Inc., contact Eclectic Media Productions at: (813) 960-8412; (813) 389-0801; or info@mediaproductions.tv


About Ehlers-Danlos Syndrome:

Ehlers Danlos Syndrome is a group of heritable connective tissue disorders characterized by (joint) hyper mobility, skin extensibility (stretchy skin) and tissue fragility (scaring & bruising).

It is caused by faulty collagens. Collagens provide structure and strength to connective tissue throughout the body. Type III collagen is mostly found in skin, blood vessels, and internal organs.

There are six major types of Ehlers-Danlos Syndrome. The different types of EDS are classified according to their manifestations of signs and symptoms.

Many patients have signs and symptoms from several types of EDS making a correct diagnosis very difficult.

There is no cure and no treatment for Ehlers-Danlos Syndrome.