We want the world to understand the suffering Ehlers-Danlos causes and the need for greater awareness, expanded research, earlier diagnosis, and better treatment — worldwide.
McLean, VA (PRWEB) June 17, 2016
Today The Ehlers-Danlos Society announced that it will hold a rally in Baltimore’s Inner Harbor to spread awareness and shine a spotlight on Ehlers-Danlos syndrome, a highly underdiagnosed and misdiagnosed genetic disorder, at 4:30pm on Saturday, July 16. The rally will immediately follow the Society’s Global Learning Conference which will be held at the Hilton Baltimore July 14-16. Over 500 attendees are expected at the conference, and many will take part in the rally, which is open to the public.
The rally will be attended by people living with Ehlers-Danlos syndrome from around the globe, as well as their families and friends. Local elected officials and key EDS medical experts will be present to make remarks, and several EDS patients will share their stories.
The rally is being dubbed the "Zebra Rally" because the zebra is the unofficial mascot of the EDS community. In medicine, the term "zebra" is used to describe a rare disease or condition and the majority of the types that make up the Ehlers-Danlos syndromes are rare.
Co-Executive Directors Lara Bloom and Shane Robinson expressed excitement about the upcoming rally.
"People with Ehlers-Danlos have been overlooked for too long. Lack of awareness and understanding is literally costing lives throughout the world.
"We are tired of waiting. Too many are disabled, disillusioned, or dying. This is our time to take action. We want the world to understand the suffering Ehlers-Danlos causes and the need for greater awareness, expanded research, earlier diagnosis, and better treatment — worldwide," states co-executive director Lara Bloom.
"This is a movement. To cut through the noise in an election year, we are taking our cause to directly to the public. Through patient testimonies, interactive experiences, and our media campaign, we seek to build real, first-hand awareness across the U.S. and throughout the world," says Shane Robinson, Maryland Assembly person and co-executive director of The Ehlers-Danlos Society.
Lara Bloom adds, "#ZebraStrong will be a demonstration of our hope, our strength, and our resolve to show the world that while we are stronger than our ailments — and we are unwilling to let our pain steal another moment from our lives. Our pain is real, relentless and demanding of treatment wherever we live in the world!"
EDS is a collection of heritable connective tissue disorders characterized by hypermobile joints (joints that move in greater amounts than expected), skin involvement, and tissue fragility. Individuals with EDS have a defect in their connective tissue, the tissue that provides support to many body parts such as the skin, muscles, and ligaments. Either directly or indirectly, EDS is known or thought to alter the biology of collagen, the most abundant protein in the body, which can lead to multi-systemic symptoms. Collagen is a protein, which acts as a "glue" in the body, adding strength and elasticity to connective tissue. Depending on the individual, the severity of EDS can vary from mild to life-threatening.
For more information on the rally, please send an email to anna.haber(at)ehlers-danlos(dot)com
About the Ehlers-Danlos Society: The Ehlers-Danlos Society is the leading authority for Ehlers-Danlos syndrome (EDS), a group of genetic connective tissue disorders. To support research and education about EDS to prevent disfigurement, crippling, and premature death through early and accurate diagnosis, the society increases awareness about EDS by fostering and funding research, generating and distributing accurate and responsible information, and delivering recommendations for those seeking diagnosis of problems that have been a life-long mystery. The society also provides support to those who have been diagnosed with EDS by offering information and emotional validation for the newly diagnosed wrestling with what a genetic disorder means for them and their families, and provides tips for those who have lived with EDS for years, including day-to-day inspiration and news. EDNF’s members are physicians and other medical practitioners, researchers, people with EDS, and friends. For more information, visit http://www.ehlers-danlos.com.