Endometriosis: Devastating disease still being left out of current health policy discussions
Join the global movement to empower our generation to speak out about endometriosis
Dear Honorable Members of the U.S. Senate and U.S. House of Representatives:
We would like to thank you for supporting or considering the 21st Century Cures Act and Precision Medicine Initiative, policy measures that could surely help usher in a new era of improved health outcomes for our nation*s citizens.
Though we know H.R. 6 is still under consideration by the Senate, we nevertheless would like to bring to your attention the plight of the 8-10 million American citizens who suffer from endometriosis, a potentially devastating disease which we believe has been left out of these health policy conversations.
Endometriosis is an incurable, estrogen-dependent chronic disease that can potentially cause incapacitating pain with menstruation in particular, organ damage, bowel & bladder dysfunction, infertility, and other severe medical consequences if inadequately treated. In fact, endometriosis (and adenomyosis) is the third leading cause of gynecologic hospitalization and is the leading cause of the estimated 600,000 hysterectomies performed each year in the U.S.
Although one rarely hears about it in the news, endometriosis is actually common, affecting at least an estimated 1 in 10 women and girls; that is roughly 8-10 million in the U.S., 200 million worldwide, and about eight times the prevalence of autism. While endometriosis most commonly affects the reproductive system, it can also cause damage throughout the entire body, including on the lungs, bladder, bowel, diaphragm, nerves, muscles, and kidneys. Thanks to the tireless awareness efforts by patients themselves, endometriosis is also finally being recognized as one of the most painful chronic diseases on record, causing pain levels reported to match or exceed those of child birth labor, heart attacks, kidney stones, and appendicitis.
Despite these alarming statistics, endometriosis continues to be one of the most urgent yet ignored public health issues of our time, and those afflicted face unacceptably lengthy diagnostic delays of up to 10 years ? or even longer. The end result is that millions of American citizens suffer for years with excruciating pain and preventable organ damage before receiving the proper medical care that they need. By the time those afflicted do receive a proper diagnosis, sometimes it*s simply too late; organs and fertility and lives will have already been severely, and often irreparably, damaged.
Endometriosis is truly a profoundly grave public health issue, indeed, one of the most potentially incapacitating chronic diseases that women and girls could ever face in their lifetimes. This is why thousands of endometriosis activists from around the world have now joined together to organize global awareness initiatives (Worldwide EndoMarch & World Endometriosis Day) which have gained the support of over 25,000 activists from across the globe, with chapters in nearly all 50 U.S. states and in over 50+ countries.
*How You Can Help*
We have certainly come a long way since the days when endometriosis was referred to as the *career woman*s disease* or *Eve*s Curse.* However, we still could use your help. With gynecologic diseases still steeped in stigma, it has been an uphill battle to get the issue of endometriosis covered in mainstream news outlets. That is why we hope you will consider championing our cause by including endometriosis in the conversations happening now at the Precision Medicine Initiative summits and 21st Century Cures Act panel discussions which may still be underway. Women and girls with endometriosis need a cure, non-invasive diagnostic tests, awareness initiatives in public schools, and increased funding for endometriosis research.
*Endometriosis Activists of Note*
By any standard, endometriosis sufferers are true American heroes, who continue to make great sacrifices for the sake of future generations, their suffering utterly unacknowledged, yet still traveling great distances to organize annual awareness marches, even though many are in excruciating pain or just recovering from their third or fifth or tenth surgeries. You could search far and wide, but rarely would you find any group more deserving and in more urgent need of your support. And so, we hope you will join us, so that, together, we can be the generation that finally takes a stand against endometriosis. In so doing, the 114th Congress would become the first in U.S. history to address one of the most neglected women*s health issues of our time, a change that would indeed finally help deliver 21st Century medicine to the millions who*ve been living in the shadows of silence for far too long.
Thank you very much for taking time to consider our cause.
Very Respectfully,
A Concerned Citizen, Endometriosis Activist & EndoMarch Member
Worldwide EndoMarch | World Endometriosis Day
www.endomarch.org | info@endomarch.org
We would like to thank you for supporting or considering the 21st Century Cures Act and Precision Medicine Initiative, policy measures that could surely help usher in a new era of improved health outcomes for our nation*s citizens.
Though we know H.R. 6 is still under consideration by the Senate, we nevertheless would like to bring to your attention the plight of the 8-10 million American citizens who suffer from endometriosis, a potentially devastating disease which we believe has been left out of these health policy conversations.
Endometriosis is an incurable, estrogen-dependent chronic disease that can potentially cause incapacitating pain with menstruation in particular, organ damage, bowel & bladder dysfunction, infertility, and other severe medical consequences if inadequately treated. In fact, endometriosis (and adenomyosis) is the third leading cause of gynecologic hospitalization and is the leading cause of the estimated 600,000 hysterectomies performed each year in the U.S.
Although one rarely hears about it in the news, endometriosis is actually common, affecting at least an estimated 1 in 10 women and girls; that is roughly 8-10 million in the U.S., 200 million worldwide, and about eight times the prevalence of autism. While endometriosis most commonly affects the reproductive system, it can also cause damage throughout the entire body, including on the lungs, bladder, bowel, diaphragm, nerves, muscles, and kidneys. Thanks to the tireless awareness efforts by patients themselves, endometriosis is also finally being recognized as one of the most painful chronic diseases on record, causing pain levels reported to match or exceed those of child birth labor, heart attacks, kidney stones, and appendicitis.
Despite these alarming statistics, endometriosis continues to be one of the most urgent yet ignored public health issues of our time, and those afflicted face unacceptably lengthy diagnostic delays of up to 10 years ? or even longer. The end result is that millions of American citizens suffer for years with excruciating pain and preventable organ damage before receiving the proper medical care that they need. By the time those afflicted do receive a proper diagnosis, sometimes it*s simply too late; organs and fertility and lives will have already been severely, and often irreparably, damaged.
Endometriosis is truly a profoundly grave public health issue, indeed, one of the most potentially incapacitating chronic diseases that women and girls could ever face in their lifetimes. This is why thousands of endometriosis activists from around the world have now joined together to organize global awareness initiatives (Worldwide EndoMarch & World Endometriosis Day) which have gained the support of over 25,000 activists from across the globe, with chapters in nearly all 50 U.S. states and in over 50+ countries.
*How You Can Help*
We have certainly come a long way since the days when endometriosis was referred to as the *career woman*s disease* or *Eve*s Curse.* However, we still could use your help. With gynecologic diseases still steeped in stigma, it has been an uphill battle to get the issue of endometriosis covered in mainstream news outlets. That is why we hope you will consider championing our cause by including endometriosis in the conversations happening now at the Precision Medicine Initiative summits and 21st Century Cures Act panel discussions which may still be underway. Women and girls with endometriosis need a cure, non-invasive diagnostic tests, awareness initiatives in public schools, and increased funding for endometriosis research.
*Endometriosis Activists of Note*
By any standard, endometriosis sufferers are true American heroes, who continue to make great sacrifices for the sake of future generations, their suffering utterly unacknowledged, yet still traveling great distances to organize annual awareness marches, even though many are in excruciating pain or just recovering from their third or fifth or tenth surgeries. You could search far and wide, but rarely would you find any group more deserving and in more urgent need of your support. And so, we hope you will join us, so that, together, we can be the generation that finally takes a stand against endometriosis. In so doing, the 114th Congress would become the first in U.S. history to address one of the most neglected women*s health issues of our time, a change that would indeed finally help deliver 21st Century medicine to the millions who*ve been living in the shadows of silence for far too long.
Thank you very much for taking time to consider our cause.
Very Respectfully,
A Concerned Citizen, Endometriosis Activist & EndoMarch Member
Worldwide EndoMarch | World Endometriosis Day
www.endomarch.org | info@endomarch.org
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