Endometriosis Research Center - Official Endometriosis Research Center
If 7million men suffered unbearable pain with sex and exercise and were offered pregnancy, castration or hormones as treatment, Endo would be a national emergency to which we would transfer the defense budget to find a cure.-Nancy Petersen, RN ERC Advisor
Female
38 years old
DELRAY BEACH, Florida
United States
Endometriosis Research Center - Official's Interests
General
FREE Endometriosis Research, Awareness, Education and Support.
Movies
Endometriosis: The Inside Story by Belle Browne, RN
http://www.endometriosis.org
Books
If you are in the market for books, following are some great suggestions. If you'd like to help support the cause, consider ordering them through our website at http://www.endocenter.org/bookstore.htm. As an affiliate, the ERC receives a portion of the sale proceeds.
100 Questions & Answers about Endometriosis by David B. Redwine, MD
Surgical Management of Endometriosis by David B. Redwine, MD
Living Well with Endometriosis: What Your Doctor Doesn't Tell You...That You Need to Know (Living Well) by Kerry-ann Morris
Endometriosis and Other Pelvic Pain by Susan Evans, MD
The Endometriosis Natural Treatment Program: A Complete Self-Help Plan for Improving Health and Well-Being by Valerie Ann Worwood
Endometriosis: Healing Through Nutrition by Dian Shepperson Mills
Coping with Endometriosis: A Practical Guide by Glenda Motta
Explaining Endometriosis by Lorraine Henderson
Endometriosis: A Natural Approach by Jo Mears
Living With Lung and Colon Endometriosis: Catamenial Pneumothorax by Glynis Wallace
Step right up & take your chances!: A personal journey through endometriosis, infertility, and adoption by Maureen Linse-Adras
Heroes
The women and girls who struggle every day to overcome this insidious disease, and the healthcare professionals who struggle to make a positive difference in their lives.
Endometriosis Research Center - Official's Details
JOIN THE ERC TO "STAMP OUT ENDO"!!! Please read and pass on TODAY!
Endometriosis is a painful reproductive and immunological disease in which tissue similar to uterine lining (known as the endometrium) migrates outside the womb and implants in other areas of the body.
Unlike normal endometrium, these implants have no way of leaving the body and result in potentially crippling pain, scar tissue and adhesions, infertility and pregnancy loss, bleeding, inflammation, formation of cysts, and even blockage of nearby organs.
The disease, for which there is no absolute cure, affects nearly 10 million women and girls in the United States alone and another 70 million globally. Endometriosis is a leading cause of female infertility, chronic pelvic pain, immunologic disruption, and pelvic surgery in the United States. In addition, the disease accounts for more than half of the 600,000 hysterectomies performed in the U.S annually.
Often stigmatized and minimized as “killer cramps,” symptoms include painful periods, pelvic pain at any point in a woman or girl's cycle, infertility, pain with sexual activity, gastrointestinal and urinary tract difficulties, and more. The disease can even implant in areas like lungs, diaphragm, and beyond – and in some cases, even the brain. Research has shown an elevated risk of certain cancers, autoimmune, and other disorders in those with Endometriosis, as well as malignant changes within the disease itself. Researchers remain unsure as to the definitive cause of Endometriosis (which can only be diagnosed through surgery), though recent studies indicate genetics, immune dysfunction and exposure to environmental toxicants as potential contributing factors.
In addition to the devastating physical and emotional impact the disease can have on women and teens, it is an extremely costly illness. The economic impact alone is staggering: indeed, researchers estimate that menstrual pain is responsible for nearly 600 million lost work hours and a staggering $2 billion in lost productivity each year. In addition, the cost of surgery required to diagnose the disease in each patient adds greatly to the financial burden for both consumers and companies alike.
Yet, despite being one of the most highly prevalent and costly diseases of our time, Endometriosis continues to be mistakenly treated as an insignificant, obscure ailment. Awareness is largely lacking among the lay and medical communities alike. Research also continues to remain significantly under-funded and is largely directed at the infertility aspect, rather than the disease itself. For instance, in fiscal year 2000, the National Institutes of Health planned to spend $16.5 billion on research. Of that funding, only $2.7 million was earmarked for Endometriosis - amounting to approximately 40 cents per patient. This is in stark contrast to other illnesses such as Alzheimer's Disease and Lupus, which received approximately $105 and $30 per patient, respectively.
The ERC maintains that Endometriosis is far more than just “painful periods.” It remains misdiagnosed, misunderstood and ineffectively treated, despite being one of the most prevalent causes of pelvic pain in women and teens in America and beyond our Country’s borders. The disease knows no racial or socioeconomic barriers, and affects women ranging from adolescence to post-menopause. It can be so painful as to render a patient unable to care for herself or her family, attend work, school, or social functions, or go about her normal routine. Even today, data has shown that the average delay in diagnosis remains an astounding 9 years, and a patient will seek the counsel of 5 or more physicians before her pain is addressed. It is not unusual for the patient to undergo repeated surgeries and embark on different medical therapies in an attempt to treat the illness; many carrying significantly negative side effects and none offering long-term relief.
Research continues to grow even more ominous. In addition to the elevated risks of other health concerns (including certain malignancies, Thyroid disease, Rheumatoid Arthritis, Lupus, Fibromyalgia, Multiple Sclerosis, chronic migraines, Interstitial Cystitis and more) associated with Endometriosis, we now know as well that the disease may have an even bigger impact on America’s youth than was previously recognized: for example, in those under 22 years of age, the rate of recurrence was double that of older women (35% versus 19%), and studies have revealed that the disease behaves differently in those younger patients, leading researchers to conclude it may be a different form of – and perhaps more insidious - Endometriosis altogether.
The ERC has worked for years with concerned legislators and policymakers around the country to establish Resolutions and Proclamations formally recognizing the need for disease awareness throughout society. To that end, we were the first to work with United States Congress to establish the country's first-ever National resolution, H. Con. Res. 291.
Introduced on behalf of the ERC by Congressman Howard “Buck” McKeon and supported by numerous co-sponsors, H. Con. Res. 291 unanimously passed the floor and formally proclaimed “March as National Endometriosis Awareness Month” for the first time in our country’s history, expressing “the sense of the United States Congress that it strongly supports the ERC's efforts to raise public awareness of Endometriosis throughout the medical and lay communities and recognizes the need for better support of patients with Endometriosis, the need for physicians to better understand the disease, the need for more effective treatments, and ultimately, the need for a cure." Since that time, New York, New Mexico, Colorado, Florida, Michigan, California, Wyoming, Utah and Pennsylvania are among others at the state level that have passed Resolutions with the ERC officially recognizing the Month of March as "Endometriosis Awareness Month" as well.
We hope we can now count on the support of the USPS for the same validation at raising National awareness about Endometriosis through the creation of a beautiful stamp paying tribute to the lives of all the women and girls in the United States – and their loved ones – who are struggling with this disease every day.
Petition:
Whereas Endometriosis is a leading cause of infertility, chronic pain, immunologic disruption and pelvic surgery in the United States, we the undersigned respectfully request the Citizens’ Stamp Advisory Committee to approve an Endometriosis Stamp honoring the estimated 10 million American women and girls suffering from this insidious, as-yet incurable illness.
This petition is consistent with public opinion and represents a broad National interest, and features a highly relevant subject affecting the American female public, their loved ones, and the health professionals who strive to treat them. Coinciding with the ERC’s ongoing “Endometriosis Awareness Month” campaign, it is our further hope that such a stamp may be unveiled to the American public in the month of March.
The Endometriosis Research Center, a volunteer based 501(c)3 tax-exempt, tax-deductible foundation, wholly supports this interest and cause, and freely gives our Internationally recognized symbol, the “Endometriosis Awareness Angels,” created and donated to the ERC by artist Christine Marlow, to this effort as a representative mark of this important and crucial campaign.
By signing this petition I demonstrate my support of the ERC’s efforts to campaign for creation of an Endometriosis stamp and express my willingness to allow the ERC to use my name and any subsequent information provided by me in furtherance of their mission to secure a United States Postal Service Stamp honoring the lives of the millions of American women and girls struggling with this disease and to bring about widespread National awareness which will hopefully lead to better recognition of Endometriosis, more effective treatments, and ultimately – one day – a cure.
SIGN NOW (may need to copy and paste entire URL into new browser):
http://www.gopetition.com/online/22615.html
ENDO LETTER FROM SURVIVORS: We are the owners of the "Endometriosis Letter from Survivors" that has been circulated countless times around the globe and reposted to thousands of websites over the past 12+ years. To get your copy of the Letter, read on. Thank you for your support and for helping to spread the message to society about this insidious illness! **SIDE NOTE: We continue to see the Letter posted without credit, as "Anonymous," or otherwise without permission on several blogs, sites, forums, etc. Folks - common courtesy dictates that credit is given where credit is due. This Letter has been circulating for almost 12 years and has been read by countless visitors in every country around the globe; it is widely known that we are the source. If you see it posted without proper attribution, please direct the site owner here for further info or contact us directly. Thank you.**
"Dear Parents, Partners, Friends,
Families, Employers & Doctors: We have spent the last years of our
lives apologizing for being stricken with a disease we did nothing to contract,
and we can do it no longer. We are asking one last time for your understanding.
We are not responsible for not living up to your expectations the way you
think we should. What you seem to fail to realize, is that you are just
as much a part of the cycle of the disease as we are, because you are not
getting the whole of our person and our capabilities. We are not lazy,
we are not whiners, we do not make the pain up in our heads...We have Endometriosis."
Want to read more? BE SURE TO CHECK OUT THE OFFICIAL
"ENDOMETRIOSIS SURVIVOR'S LETTER" HERE!
Want to repost the Letter on your own page? No problem! Just email us to let
us know your intention and then take your copy to help start spreading
Endo awareness today! Thanks for your support! Brochure format also available. **Please note, copies of this Letter appearing without the required notice of copyright are being used without permission of the author or the ERC and constitute stolen works.**
Like to shop? Want to support
the cause and help us find a cure?http://www.iGive.com/Endo
Click the link above to
get started...it's free and easy and can help make a difference!
The Endometriosis Research Center is an established 501(c)3 tax-exempt, tax-deductible organization
that was founded by early 1997, in order to address the growing International
need for Endometriosis research, education, awareness and support.
The ERC is unique in that unlike similar organizations, the foundation
is strictly donation-supported and there is never a fee to join, participate
in or benefit from the ERC's programs. While world headquarters located
in South Florida, USA, the organization's mission is global. We are striving every day to make it possible for all women and girls with this disease to get the help they need. Learn
more and join for free today at http://www.endocenter.org.
Who I'd like to meet: Any and all visitors concerned with Endometriosis on a professional or lay level are welcome and encouraged to contact the ERC and add us to your links and 'friends' list.
Here at Make Me A MOM (www.makemeamom.net ) we try and help out as many people as we can. If you don't have anything to donate, just donate a moment of your time and ask your friends to join and spread the word. This may help you or someone close to you who is trying to have a baby. Remember every person can make a difference and never give up on your dream.
Just got a call from God, He said he lost an angel.. Shhh, I didn't tell him where you were, because I wanted to keep you forever :) Send this to all of your True Friends including me if I am one. I sent an angel to watch over you last night, but it came back. I asked, "Why?"... The angel said: "Angels don't watch over angels!" If one day you feel like crying, call me. I don't promise that I will make you laugh, but I can cry with you. If one day you want to run away, don't be afraid to call me. I don't promise to ask you to stop, but I can run with you. If one day you don't want to listen to anyone, call me. I promise to be there for you but also promise to remain quiet. But one day if you call and there is no answer, come fast to see me. Perhaps I need you. Send this to all your friends, no matter how often you talk or how close you are and send it to the person who sent it to you. Let old friends know you haven't forgotten them, and tell new friends you never will. Remember, everyone needs a friend. Twenty angels are IN Your World. Ten of them are sleeping. Nine are playing. One is reading this comment. . .
Thanks for the add. I'm glad there's a community online where we can all give each other hope and strength to fight this awful disease. Diagnosed 3/9/09. ~Rebecca
Online Now!
