Nevadans suffering from EDS see promise in educational promotion
This month is “Ehlers-Danlos Syndrome Awareness Month” in Nevada, thanks to a proclamation by Gov. Brian Sandoval.
The proclamation comes as due relief to Nevadans who struggle through each day coping with the effects of EDS. Sandoval agreed to shine a spot light on the disease after working with Sparks resident and EDS sufferer Danielle Davis, who pushed for state recognition.
EDS causes a person’s connective tissues at the joints to become very loose and unstable, causing painful dislocations. Skin easily bruises, scars, and tears, and arteries and organs easily rupture.
Despite its relative obscurity, a conservative estimate is that one in every 5,000 people 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.
“Beautiful spring weather presents lots of opportunities for people of all ages to get out into their communities and raise awareness and hope,” Davis said, “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. With Nevada’s population estimated around 2,500,000, there are likely more than 500 people with the syndrome living in the Silver State.
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, go online to DanielleDavisEDS.com and http://www.ehlersdanlosnetwork.org/index.html.