The documentary helps raise awareness of EDS, while energizing those affected to build a community that will effect change.
McLean, VA (PRWEB) November 04, 2015
The Ehlers-Danlos National Foundation (EDNF) is proud to announce a series of screenings of the documentary, “Issues with my Tissues,” which highlights the genetic connective tissue disorder, Ehlers-Danlos syndrome (EDS). The inspirational documentary features Lara Bloom, who is helping to launch EDS International, and the first person with EDS to walk the London Marathon in 2011. Bloom will host a discussion following the 50-minute documentary. The screenings will take places on the following dates:
● November 8, 2015: Toronto, Canada at the Shaarei Shomayim synagogue
● November 11, 2015: Houston, Texas at the University of Houston College of Optometry
● November 17, 2015: Towson, Maryland at the Greater Baltimore Medical Center
Bloom’s compelling documentary of her journey features interviews with medical professionals, families with EDS and individuals who have suffered from the frustrations of fighting for a diagnosis and treatment. The documentary also covers how Bloom became the first person with EDS to complete the London Marathon in 2011 by walking the distance in eight hours and 18 minutes. She fractured her foot on the 13th mile, but continued to the finish line, raising over £10,500 for EDS UK.
Bloom was the chief operating officer of Ehlers-Danlos Support UK and is currently working with EDNF to launch a global organization called the Ehlers-Danlos Society International which she will lead along with an international board of directors. EDS International will officially launch in May, 2016 during the EDS International Symposium in New York City.
“We are thrilled to present a screening of Lara’s documentary, ‘Issues with my Tissues,’” said Shane Robinson, CAE, EDNF executive director. “The documentary helps raise awareness of EDS, while energizing those affected to build a community that will effect change."
EDS is a heterogeneous group of heritable connective tissue disorders characterized by articular hypermobility, skin extensibility 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. The fragile skin and unstable joints found in EDS are the result of faulty collagen. 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. People with EDS may experience significant pain, hyper-flexible or unstable joints, skin that tears or bruises easily, and problems with their digestive, excretory and cardiovascular systems.
For more information on the screenings, please send an email to ednfstaff(at)ednf.org
About Ehlers-Danlos National Foundation (EDNF): EDNF 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, EDNF 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. EDNF 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.ednf.org.