Mayor Lacher Proclaims May is EDS Awareness Month

Affected Friday Harbor Residents See Promise in Educational Promotion

Dani Davis-Robeson - photo courtesy of Daniel Jackson Photography

Dani Davis-Robeson – photo courtesy of Daniel Jackson Photography

This month is “Ehlers-Danlos Syndrome Awareness Month” on San Juan Island, thanks to last week’s proclamation made by Mayor Carrie Lacher. The proclamation comes as due relief to the Washingtonians who struggle through each day coping with the effects of the Ehlers-Danlos Syndrome (EDS). Lacher agreed to shine a spotlight on EDS after working with SJI resident and EDS sufferer Dani Davis-Robeson, who pushed for county recognition.

Where and When? Mayor Lacher will be off-island, so in her absence Steve Hushebeck will be Mayor Pro Tem and he will present the proclamation to Dani Davis-Robeson at the next Town Hall meeting on Thursday, April 21st, at Noon, for all to hear. View the proclamation here (PDF)

What is EDS? As described in the Mayor’s proclamation, it causes a person’s connective tissues at the joints to become very loose and unstable, causing painful dislocations. Skin very easily bruises, scars, and tears, and arteries and organs easily rupture. Despite its relative obscurity, a conservative estimate is that one in every 2,500 people born have EDS. There has been little research leading to successful treatments, but Davis hopes that the tide is turning as more people learn about EDS.

“May is a great time of year to promote EDS awareness and bring researchers closer to developing effective treatments and cures,” says Davis-Robeson. “Beautiful Spring weather presents lots of opportunities for people of all ages to get out into their communities and raise awareness and hope by holding fundraising events, getting permission to hang EDS posters in doctors’ offices, hospitals, and local hangouts, handing out brochures to friends, family and the public, and whatever else the imagination inspires!”

Depending on the individual mutation, the severity of EDS can vary from mild to life-threatening. Many with EDS are not diagnosed until well into adulthood and, in certain cases, not until after they die from its complications. Serious and often fatal complications typically occur in a person’s 30s.

For more information on EDS, including how to support important and promising research for treatments and cures, please visit http://LifewithEDS.com and http://EDNF.org.

Posted on April 21, 2016 at 5:56 am by

Categories: Education, Government, Health & Wellness
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