March 1, 2012
FOR IMMEDIATE RELEASE
Worldwide Endometriosis Association Action
March is Endometriosis Awareness Month. Endometriosis is a hormonal and immune system disease affecting at least 6.3 million women and girls in the United States, and more than 89 million worldwide. During this National Health Observances month, the Endometriosis Association encourages its members and friends to wear a yellow ribbon for Endo Awareness, and to educate others about this disease that affects girls as young as eight years old and women of all ages.
Yellow “Ask me about endo” ribbons (in English, French, and Spanish) and informational brochures about endometriosis (in 30+ languages) may be obtained free of charge by contacting the Endometriosis Association at (414) 355-2200 or at endo@EndometriosisAssn.org.
The Association, which created Endometriosis Awareness Month in 1993, expects to send thousands of awareness ribbons and brochures worldwide this March. In addition to its comprehensive “yellow” brochure, the Association also has brochures for specific populations—girls, teens, and women in menopause. The response thus far has been so great that the Association has already had to reorder ribbons and brochures.
This is the first year that the yellow ribbon is available in Spanish. It is imprinted with the phrase “Pregúnteme acerca de endometriosis” (“Ask me about endometriosis”), and “Endometriosis Association.”
Health Matters at Work , an informative program of Community Health Charities of America (a workplace giving campaign partnership), spotlights endometriosis and the Association in a podcast this month. The podcast features an interview with Endometriosis Association President and Executive Director, Mary Lou Ballweg, and can be found here.
Endometriosis has been in the news recently with the release of a report on the higher risk for three types of ovarian cancer in women with a history of endometriosis. The study was conducted by the Ovarian Cancer Association Consortium, comprised of over 40 groups of investigators from around the world conducting studies on ovarian cancer. Further information about the study published in The Lancet Oncology, go to http://www.endometriosisassn.org/inthenews.html .
The name of the disease endometriosis comes from the word endometrium, which is the tissue that lines the inside of the uterus and builds up and sheds each month in the menstrual cycle. In “endo,” tissue like the endometrium is found outside the uterus in other areas of the body, most commonly the abdomen. It develops into growths that cause pain, infertility, and other problems.
The Endometriosis Association is an international self-help organization that offers mutual support to those affected by endo, educates the public and the healthcare community about the disease, and promotes and conducts research related to endo. The Association was founded in Milwaukee, WI in 1980.
More information about the disease can be obtained from the Endometriosis Association’s book,Endometriosis: The Complete Reference for Taking Charge of Your Health, the Association’s website at www.EndometriosisAssn.org, or by contacting the Association.
The National Health Observances Month calendar (published by the U.S. Department of Health and Human Services) can be found at http://healthfinder.gov/nho/nho.asp#m3 .
February 21, 2012
FOR IMMEDIATE RELEASE
March 21, 2011
FOR IMMEDIATE RELEASE
Six to Be Honored for Demonstrating Extraordinary Leadership in Women's Health
Madison – The Wisconsin Women’s Health Foundation will honor six individuals with Champion in Women’s Health Awards on Saturday evening, May 7 at the Madison Club, 5 East Wilson Street, Madison. Wisconsin Women’s Health Foundation founder and president, Sue Ann Thompson, will present the awards at a reception from 5:00 – 6:00 pm.
The Wisconsin Women’s Health Foundation created the Champion in Women’s Health Awards to honor individuals who have demonstrated extraordinary leadership in women’s health.
“We received more than 23 nominations from all over the state,” says Sue Ann Thompson. “After the
Champions will also be honored later that evening during the Wisconsin Women’s Health Foundation’s 12th Annual Spring Gala held at the State Capitol Rotunda from 7:30pm – midnight.
The Wisconsin Women’s Health Foundation (WWHF) is a statewide non-profit organization whose mission is to help Wisconsin women and their families reach their healthiest potential. WWHF provides programs and conducts forums that focus on education, prevention, and early detection of diseases that affect women the most; connects individuals to health resources; produces and distributes the most up-to-date health education and resource materials; and, awards grants and scholarships to women health researchers and related community non-profits. To learn more, visit wwhf.org or call 1-800-448-5148.
Jan 4, 2010
Endometriosis Association Associate Director Carol Drury Testifies at Institute of Medicine
Testimony in Washington, D.C. Focuses on Plight of Girls and Teens in Chronic Pain
MILWAUKEE, WI, January 4, 2011 – Carol Drury, Associate Director of the Endometriosis Association, testified today in Washington, D.C. before a committee of the Institute of Medicine (IOM) about the plight of girls and teens in chronic pain. She urged the committee to recommend to the National Institutes of Health (NIH) the expansion of pain research, particularly as it relates to painful conditions that often co-occur as a result of endometriosis and/or other conditions that solely or primarily affect females.
Her testimony follows:
The Endometriosis Association is one of the founding members of the Chronic Pain Research Alliance. This Committee has previously heard from Terrie Cowley, President of the TMJ Association, another of the Alliance founding members. The other two founding members of the Alliance are the National Vulvodynia Association, and the CFIDS Association of America. This Alliance created the Campaign to End Chronic Pain in Women to draw attention to chronic pain conditions that solely or disproportionately affect women. And today I want to highlight for the Committee an unrecognized subgroup of that population--girls and teens living with chronic pain.
It is hard to imagine that girls as young as eight—even prior to their first menses—can begin having pelvic pain symptoms that are later—usually much later—diagnosed as endometriosis.
Kari wrote to us last month: “We found out about my daughter’s endo when she was 11. She had painful symptoms before her first period and we went to numerous doctors who told us everything from ‘Amanda or a family member is making up these symptoms to get attention and/or drugs’ to ‘Amanda just needs to understand that cramps are a way of life for women.’ Her first surgery was at age 12, and even the doctor who performed the surgery was shocked at the extensiveness of her endo. Now, after two-and-a half years, Lupron, [other] drugs, and more surgery, we are making a last effort to save her reproductive ability.”
What is unusual about Amanda’s story is that she found a doctor willing to perform surgery on someone so young, and willing to prescribe something more than a birth control pill or over-the-counter analgesics. While the reluctance of doctors to take dramatic measures in the case of girls—to perform surgery or prescribe strong pain killers—is understandable on first look; it is simply unacceptable to leave girls in severe chronic pain. When adults cannot cope with unrelenting pain and the hopelessness of the current state of treatments—how can we expect a girl to do so?
Sadly, we have lost too many of these girls to suicide. There are no studies or statistics—just the stories shared with us and the other Alliance organizations by their devastated families.
Recently we were told of a girl whose parents were making arrangements to see yet another endometriosis specialist for her pain. She told them, “Don’t waste your money. We’ve seen the best experts in the country and they couldn’t do anything.” She went to her bedroom and took her own life.
We can only imagine the hopelessness and despair she felt thinking that her pain would never go away. What future could she imagine for herself except more of the same? It is simply unacceptable to leave anyone—much less a child—in such pain that there is no hope for relief or anything resembling a “normal” life. We have to do better. We need to ultimately be able to prevent or cure chronic pain conditions. Meanwhile, we need safe treatments that work.
In addition to alerting you to the girls and teens out there suffering tremendously without proper treatments available to them, there is another reason I am focusing on this age group today. Alliance member organizations believe that earlier diagnosis and intervention may mitigate the severity of the diseases that cause chronic pain in adult women, as well as the prevalence of multiple conditions in a single patient.
The current age of onset of symptoms of many chronic pain conditions, and the amount of time before diagnosis is unsettling. Sixty six percent of women with endometriosis had their first symptoms before the age of 20. More than 30% had symptoms before the age of 15. Half of them saw at least five providers before receiving a diagnosis or referral.
The initial symptoms of vulvodynia often occur in the teen and early adult years, and we are now seeing symptoms in pre-pubescent girls. Forty percent remain undiagnosed after three medical consults. TMJ symptoms can start in the teens and can take four years to diagnose.
Current research indicates that many of these conditions, as well as others such as interstitial cystitis, fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, migraine, and autoimmune disorders frequently coexist. While studies have not yet identified the exact rates of overlap, we know that some women suffer from two conditions, while others have three or more.
We need research into the nature of the development of coexisting conditions. We need to know if earlier intervention will limit the severity and progression of these diseases and the development of coexisting conditions. Researching these conditions in adolescence will help us understand how the disorders begin and if and how intervening when symptoms first begin will change future outcomes. Longitudinal, prospective research starting in adolescence will help us better understand the temporal relationship of these overlapping disorders.
Is there a common risk factor related to the development of these conditions? Is it dysmenorrhea? Are there others? There must be something better than providing palliative care for a woman 15 years after diagnosis when her condition(s) cannot be reversed, only “managed.” These are but a few of the key questions that are crucial for a substantially expanded research effort to answer.
This committee has the opportunity to make a significant difference in the lives of many by shining a spotlight on pain as a public health crisis, and to provide strong recommendations to improve research, treatment and education in this area. On behalf of millions of girls and women, I thank you for the important work you have undertaken, and for the opportunity to address you today.
Contact: Carol Drury 414-355-2200 carol@EndometriosisAssn.org
The Endometriosis Association is a founding member of the Campaign to End Chronic Pain in Women, and of the Overlapping Conditions Alliance. Media contact for the Endometriosis Association is Carol Drury (414-355-2200) & Carol@EndometriosisAssn.org).
The Campaign to End Chronic Pain in Women Applauds Senate Committee Action
Appropriations Plan Calls on Key Federal Health Agencies to Improve Research and Education on Neglected Women's Chronic Pain Conditions
WASHINGTON D.C. (August 3, 2010) – The Campaign to End Chronic Pain in Women applauds the Senate Appropriations Committee for including language in its Fiscal Year 2011 Labor, Health and Human Services, Education Appropriations Bill that directs federal agencies to advance research and promote awareness of neglected chronic pain conditions that predominantly affect women. This action was taken in response to a groundbreaking report released by the Campaign in May, documenting that the National Institutes of Health invested only $1.33 in research for every woman affected by vulvodynia, temporomandibular disorders (TMJ), endometriosis, fibromyalgia, interstitial cystitis, and chronic fatigue syndrome.
“This is another significant victory for our Campaign,” said Terrie Cowley, President, The TMJ Association. “For the first time in history, Congress has moved to enact significant policy changes that will improve the quality of health care provided to millions of American women suffering from prevalent, yet neglected and poorly understood pain conditions.”
The Senate Committee directed four federal agencies as follows:
“This is the most comprehensive set of actions Congress has ever taken to end the neglect and discrimination faced by the millions of American women with these chronic pain conditions,” said Kim McCleary, President & CEO, CFIDS Association of America.
On May 19th, the Campaign to End Chronic Pain in Women was officially launched at a Capitol Hill briefing, held in coordination with the Congressional Caucus on Women’s Issues. The Campaign’s groundbreaking report, Chronic Pain in Women: Neglect, Dismissal and Discrimination, which was released at the event, offers policy recommendations that could greatly improve the lives of millions of American women, while saving the government billions of dollars in wasted healthcare costs each year. The hour-long launch event also featured the premiere of the short film, Through the Maze: Women and Pain, and the unveiling of the Campaign website www.EndWomensPain.org.
“Education of health care professionals and the general public is essential during this time of reform, to ensure that women in this country no longer have to suffer in silence,” said Mary Lou Ballweg, President & Executive Director, Endometriosis Association.
“With this first step, we have a real opportunity to change the lives of millions of American women, their families, our economy, and society as a whole, by appropriately investing in research, as well as educating medical professionals and the public at large,” said Christin Veasley, Associate Director, National Vulvodynia Association.
About The Campaign to End Chronic Pain in Women:
The Campaign to End Chronic Pain in Women is an advocacy campaign fighting to end discrimination and improve care for women suffering from chronic pain. The Campaign is made up of volunteer leaders from the CFIDS Association of America, Endometriosis Association, National Vulvodynia Association, and The TMJ Association. For more information, visit www.EndWomensPain.org.
Endometriosis Association Now Offers
Milwaukee - The Endometriosis Association is pleased to offer for sale selected high-quality supplements that women with endometriosis have found helpful in achieving better health. This is the first time the Association has offered supplements for sale.
The five supplements the Association is selling are a multiple vitamin and mineral formula, a multi-species probiotic, magnesium citrate, a buffered vitamin C (with a bioflavonoid), and an antioxidant and detoxifying amino acid compound—all available at www.EndometriosisAssn.org.
Because endometriosis is a hormonal and immune system disease, supporting the immune system using nutritional approaches can be very beneficial to women with endometriosis. In the Endometriosis Association’s survey of 2,293 women who used alternative approaches to treating their endometriosis, more than 50% said that vitamins and minerals helped them. Some women with endometriosis and their healthcare providers have found the supplements the Endometriosis Association is offering to be particularly helpful.
The Association is offering these supplements as a service to its members (who receive a discount on the manufacturer’s suggested retail price), and as a way to raise funds for the Association, which receives the net proceeds from sales. Non-members may also purchase these supplements through the Endometriosis Association.
The Endometriosis Association selected the lab that produces these supplements based on its reputation for producing the highest-quality clinical-strength nutritional supplements, and because of its focus on hypoallergenicity, product purity, and rigorous quality control. Previously, these supplements could only be obtained primarily through healthcare providers.
Further detailed information, including a list of all ingredients for each supplement, is provided on the Association website at www.EndometriosisAssn.org or by calling 414-355-2200. The Endometriosis Association recommends that people review this information carefully with their healthcare providers before ordering as supplements may not be returned for refund.
The Endometriosis Association is an international nonprofit self-help organization of women and girls with endometriosis and their families, physicians, scientists, and others interested in this hormonal and immune-system disease. More than 89 million girls and women worldwide are affected by endometriosis.The Endometriosis Association was founded 30 years ago in Milwaukee, Wisconsin in 1980. The association provides support for those affected by endometriosis, and education about the disease. It also maintains the world’s largest research databases on endometriosis and conducts and supports related research around the world, including the Association’s flagship research program at Vanderbilt University School of Medicine in Nashville, Tennessee.
For more information about the Endometriosis Association supplements go to: http://EndometriosisAssn.org/ea_supplements.html . For more information about endometriosis, contact the Endometriosis Association at (414) 355-2200 or endo@EndometriosisAssn.org or 8585 N. 76th Place, Milwaukee, WI 53223 (USA).
Thursday, January 21, 2010
New Product Available For The
The Endometriosis Association, in conjunction with Claire Ellen Products, is happy to announce the release of ProSirona, a new product that targets endometriosis and fibromyalgia pain. Because Association members have used other formulations of this product for seven years and have frequently found it effective, we are excited to make ProSirona more widely available through our website.
Here are some key facts about ProSirona:
We believe that ProSirona is an innovative product and an important development in the treatment of endo and fibro pain because it is applied topically and presents an alternative to pain-relief drugs, including narcotics, which are administered orally. Both over-the-counter pain relievers and narcotics can have severe side effects, including GI bleeding and ulcers, even when taken according to the directions of a medical professional. In addition to having potentially serious side effects, orally administered pain relievers of all kinds can interact negatively with other medications and present the possibility of accidental overdose.
These concerns are especially relevant to women with endometriosis since they are more prone to allergies, sensitivities, and reactions to many things, including drugs. Hearing about such experiences motivated our desire to find an effective alternative to the pain relievers many women with endometriosis and fibromyalgia rely on.
ProSirona represents an important breakthrough in the treatment of endo and fibro pain, and has the potential to change the lives of those who have been dependent on other types of analgesics for the relief of chronic pain. Visit our website, www.EndometriosisAssn.org, and click on the button that says “In pain? Take back your day!” to learn more about this exciting new product.
EA Makes News: January 13 2010
Link to the original article on the TMJ4 website: TMJ4 Website
Women's Health Crisis
By Maureen Mack
One in ten women is suffering in silence from a disease most people have never heard of.
It's called endometriosis. It's painful, and hard to diagnose.
The one positive thing we can say about it... is that the biggest support group for the disease is right here in Milwaukee.
Mary Lou Ballweg knew something was wrong. She had horrible cramps and pain, and was bedridden. Finally, she discovered she had endometriosis.
"It was not taken seriously, and I wish I could say now, 30 years later that society, physicians and women and girls themselves would take 'female problems' seriously," she told us frankly.
When she was diagnosed 30 years ago, Ballweg had few resources for information, and practically no support. Her solution: Start the Endometriosis Association.
"The Endometriosis Association was the result of my own frustrations with a disease we started out not knowing was endometriosis," she said.
Immediately, she was flooded with questions and pleas for help.
"We were receiving desperate letters from all over the U.S. and Canada, and very shortly from all over the world."
So what is endometriosis? And why is it so hard to identify and treat?
Endometriosis occurs when the tissue that lines the uterus migrates... to the fallopian tubes, ovaries... bladder... even into the intestines. Regular hormonal changes cause it to bleed and heal, but it doesn't go away.
Dr. Grace Janik, a fertility specialist with lots of experience treating endometriosis, told us it is very painful.
"Because it's bleeding into your abdominal cavity, any free blood in the abdomen is painful and then it starts creating scars," she said.
Dr. Janik says even now, many physicians don't correctly diagnose endometriosis. "From the time women start having symptoms, to them obtaining treatment, is almost a 10 year delay."
While women wait, symptoms get worse. Shelley Woodson, a nurse herself, suffered for years.
"I knew it was out there, I knew it was painful, didn't know the consequences of it."
Shelley discovered the Endometriosis Association and calls the support and information a godsend. Now, she herself volunteers.
Since Mary Lou Ballweg founded the association, she's written four books, created CD's and a Web site, and sent out tens of thousands of mailings to women all over the world. But times are tight.
"It's hard for us to get grants. It's hard for us to get funding for everything we do."
The goals now: Education.
Ballweg believes doctors, the rest of the medical community, and women and girls need to be educated about endometriosis and how to get help.
MEDIA RELEASE FOR IMMEDIATE RELEASE
December 29, 2009
Professional Dimensions announces the recipients of the
Recipients of Professional Dimensions’ 2010 Sacagawea Awards are Mary Lou Ballweg, President and Executive Director of the Endometriosis Association, and Jacquelyn Fredrick, President and Chief Executive Officer of the BloodCenter of Wisconsin. Both will be honored at the annual dinner on Wednesday, March 10, 2010, at the Midwest Airlines Center.
The Professional Dimensions award is named for Sacagawea, the only woman on the Lewis & Clark expedition. A woman of many dimensions, Sacagawea was a trailblazer who distinguished herself throughout her life by her leadership, intelligence, foresight, common sense and adaptability. The 2010 honorees exemplify these qualities.
Mary Lou Ballweg, Co-Founder, President and Executive Director of the Endometriosis Association (EA), the first organization in the world created for those with endometriosis. A global non-profit association, EA has a network of chapters, groups, sponsors, and women with endometriosis in 66 countries. Ballweg founded the organization in 1980 after being diagnosed with endometriosis and experiencing frustration with medical professionals who lacked awareness and held dismissive attitudes toward the disease. Although it began as a self-help organization to provide information and support to Milwaukee women, EA has grown to support research, educate the medical community, produce books and journal articles and facilitate international conferences on the subject.
Endometriosis affects an estimated 89 million girls and women in the world today – 6.3 million in the U.S. It is a puzzling hormonal and immunological disease that strikes those as young as 8 and those well past childbearing years. Endometriosis is not only one of the leading causes of infertility, it often causes debilitating pain, atopic diseases and is associated with an increased risk of autoimmune diseases, cancer and other physical complications.
Ballweg began her career in communications, having served as the Managing Editor of Investor, Wisconsin’s Business Magazine and then launching her own film and communications company prior to being diagnosed with endometriosis. In the thirty years since she founded the organization, Ballweg has created research partnerships with the Medical College of Wisconsin, Dartmouth Medical College, the National Institutes of Health and Vanderbilt Medical School. She has published four books, overseen the production of three educational videotapes (including an award-winning teen video), developed and executed two million-dollar-plus educational awareness campaigns, and written numerous journal articles, chapters for medical texts and newsletters. Despite having no formal medical training, she is featured in the International Who’s Who in Medicine as the person most singly responsible for calling attention to endometriosis.
Ballweg was raised in the Milwaukee and Madison areas. She has a B.A. from UW-Madison and has a long list of academic and professional accomplishments, including having been instrumental in raising over $25 million for research in EA’s first 25 years. Ballweg’s partner is Jim Dorr and she has a daughter, Aquene Freechild.
Jacquelyn Fredrick, President and CEO of the BloodCenter of Wisconsin (BCW), a world-renowned, non-profit healthcare organization with a $100 million operating budget and over 800 employees. Fredrick is the first female and first non-physician to run the BloodCenter in its 60+ year history.
Fredrick began her career at BCW six years out of college as a supervisor of the laboratories. She became a vice president at the age of 34, responsible for the operations of two of the three BCW divisions. She was then recruited to the American Red Cross (ARC) in Washington, DC and took on several roles under Elizabeth Dole’s leadership of ARC. During her time there, Fredrick was chosen to lead the development of the first national testing laboratories, and was then tapped for a new national role: Vice President of Quality. She then ran the ARC Biomedical Services division, a $3 billion business with 15,000 employees prior to being recruited back to Milwaukee in 2001 to serve as the President and CEO of the BloodCenter of Wisconsin.
Since Fredrick’s return to Milwaukee, the BCW has grown from serving seven counties in southeastern Wisconsin to 54 counties covering 64% of the state. The Blood Research Institute, the research arm of BCW, has grown under her leadership, expanding National Institutes of Health funding by 200%. And at a time when many jobs are leaving Milwaukee, Fredrick has added 200 new jobs to the area, attracting talent from across the globe. This summer, Fredrick was asked by the leadership of Froedtert, Aurora, Children’s Hospital and others to take over tissue and organ procurement because of their confidence in her leadership.
Fredrick is highly sought after for professional and civic leadership. She serves as President of the board for AABB, the largest national association for individuals and institutions involved in transfusion and cellular therapies activities. She is also the Secretary of the Board for the National Marrow Donor Program, Chair of the UW-Milwaukee Research Foundation and Vice-Chair of the Milwaukee Regional Medical Center. Fredrick serves on the boards of Alverno College, Junior Achievement and the Marshfield Clinic National Advisory Council. She is a member of Professional Dimensions, the Greater Milwaukee Committee and the Rotary Club of Milwaukee. Fredrick is married to Arlyn and has two children, Nathan and Lauren.Celebrating its 31st year, Professional Dimensions is the area’s largest networking organization for professional women. It promotes the personal and professional growth of women through social and business exchange and through community participation. For an invitation to this event, please contact the Professional Dimensions office at 414-374-3570. (firstname.lastname@example.org).
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