The Worldwide EndoMarch global movement leads the fight for urgently needed improvement to the way we diagnose and treat endometriosis, a potentially crippling, whole-body chronic inflammatory disease, affecting millions of individuals worldwide. The movement has ignited an international response from people in 70+ countries and counting, leading to dramatically increased awareness and policy changes around the world.
Since the first campaign in 2014, Worldwide EndoMarch has grown to be the largest, internationally coordinated endometriosis coalition in the world. It represents over 100 organizations, groups, medical societies and even patients. These groups join together for Annual Worldwide Events, Conferences, and Marches to share the facts, their stories, to fight for change and address the urgent unmet needs of those suffering with endometriosis.
The Worldwide EndoMarch was founded in 2013 by Drs. Camran, Farr, Ceana, and Azadeh Nezhat, and Barbara Page, and is headquartered in Palo Alto, California, USA. Thanks to the efforts of those leading the EndoMarch movement, endometriosis is now being recognized as one of the most potentially excruciating and destructive medical conditions on record.
Although rarely depicted in the news, accurately, endometriosis is actually the third leading cause of gynecologic hospitalization and among the leading causes of the estimated 600,000 hysterectomies performed each year in the U.S. (despite the fact that a hysterectomy cannot actually cure endometriosis). There is no cure for endometriosis and no known cause.
Those afflicted with endometriosis can face a lifetime of severe disability & symptoms throughout the entire body, including kidney failure, chronic lung collapse, incapacitating pain, multi-organ failure, a lifetime of multiple major surgeries, infertility, increased risk for cardiovascular disease, increased risk for certain cancers, immune & endocrinologic dysfunction. Damage to multiple organs and tissues, including the bowel, bladder, ureters, diaphragm, muscles, musculoskeletal structures, nerves, ligaments, lungs, and liver.
Due to the potential for such widespread, severe chronic symptoms, endometriosis is also one of the leading causes of school absences in adolescence, and a contributing factor to work absences.
Despite such alarming statistics, endometriosis receives only pennies on the dollar in funding spent for research and public health awareness campaigns, across the globe. As a result of decades of under-funding and lack of awareness, those suffering continue to receive grossly inadequate medical care. Many experience years of multiple failed treatments and/or severe complications or side effects as a matter of course. The potential for significant harm is increased when you factor in diagnostic delays averaging 7-10 years or longer. Some have even gone 20-40 years without proper guidance. This is why each year for the “EndoMarch Days” you’ll see thousands of endometriosis sufferers and supporters organizing awareness events around the world, to get the word out that endometriosis is not just a ‘bad period’, but one of the most serious. Potentially incapacitating whole-body diseases that people can face in their lifetimes.
As collaborators with Worldwide EndoMarch, Project 514 415 and Getting the Better of Endometriosis have come together to reach society through art and literature. Project 514 415 is an art and literature-based project sharing the lived experiences of endometriosis. With an international team of ambassadors like EndoMarch, they are creating ways to reach society with these experiences, and endo facts. Behind the scenes and self funded, they are creating a coffee table style book to publish over 160 artists who submitted work. A prequal is being devised as a poem book, featuring authors directly from the endo community who submitted into the project. At the forefront, there are free posters, postcards and other extras that everyone is welcome to access and share among their own communities. Below are a few from the poster selection, including Endo Symptoms, Misconceptions, and the Amazing featured Art from selected artists along with Endo Facts.
Coming together for similar collaborations and societal reach can be beneficial for organizations with similar missions of endo awareness, advocacy, and support. Project 514 415 will be featured during this year’s EndoMarch event, March 23-24th. The founder and president of Getting the Better of Endometriosis, a smaller NonProfit, will also be featured. She is the USA and Ambassador lead for Project 514 415 and an Ohio Representative and Research Assistant for EndoMarch. She is also a patient suffering from endometriosis, as is the entirety of the Project 514 415 team, and many others directly involved with awareness initiatives every day.
Together We Can.