Profile: CHE Partner Mary Lou Ballweg

President / Executive Director
Endometriosis Association
   

Technically, CHE Partner Mary Lou Ballweg started the Endometriosis Association in bed.

It was 1979. She was working in Washington, D.C. as a writer, editor, filmmaker and consultant – as she put it, she was “having a great time.” Her work centered on issues of race, culture and gender. Then something happened that would change the course of her life forever.

“Suddenly,” she says, “I was ill with what we now understand as Chronic Fatigue Immune Dysfunction syndrome with endometriosis."

Endometriosis, or, as it is sometimes abbreviated, “endo”, is a usually-chronic disease that strikes only women. Scientists still don’t know exactly what causes it, though there are a variety of theories. Symptoms vary in intensity from mild to debilitating, and usually diminish or disappear with the onset of menopause. They can include any or all of the following:

o    Pain before and during periods
o    Pain during sex
o    Fatigue
o    Back pain
o    Bleeding
o    Pain during urination and/or bowel movements
o    Other gastrointestinal upsets such as constipation and nausea
o    Infertility

It isn’t known at this point if infertility is a symptom or an effect of the disease. Endometriosis is also associated with an increased risk of ovarian cancer and, as a 2004 study by researchers at Italy’s University of Genoa showed, an increased likelihood of developing migraine headaches.

The illness knocked Ballweg off her feet – literally – but also inspired her.

“As I lay bedridden,” she remembers, “I promised myself and the divine that once I got back on my feet I would do something to help others affected by this disease. So in January 1980, we [Ballweg and Carolyn Keith] started the Endometriosis Association.”

The primary mission of the Endometriosis Association is to provide support for families affected by endometriosis worldwide, education about the disease, and research and translational medicine related to the disease.

“Our greatest challenge continues to be that women put themselves last,” Ballweg says. “Because of the stigmatized and taboo nature of pain with menstruation, pain with sex, problems and pain with bowel and bladder function, and to a lesser degree infertility, women typically do not speak up.”

Compounding this psychological challenge is a medical one: the lack of a non-surgical diagnostic technique.

That lack is “something we are working on,” Ballweg says. “The most significant potential future development in our field is a non-invasive diagnostic technique. It appears that there will be one in the next three to five years and that will revolutionize everything related to endometriosis as more of the conservatively estimated 89 million women and girls with the disease worldwide are diagnosed.”
    

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In 1992, more than a decade after co-founding the Endometriosis Association, Ballweg helped discover a possible link (now a confirmed link) between endometriosis and a class of toxic chemicals called dioxins that are prevalent in the environment. The discovery came in the form of two dead rhesus monkeys.

According to the National Institute of Environmental Health Sciences, dioxins form during combustion processes and some industrial processes, among them waste incineration, paper pulp bleaching and herbicide manufacturing.

The highest environmental concentrations of dioxins are typically found in soil and sediment; unsurprisingly, the primary way people get exposed to these chemicals is eating contaminated food. According to Ballweg, dioxins accumulate in the fatty tissues, where they may persist for months or even years.

Dioxins have long been suspected of being carcinogenic, and the focus of concern has lingered on that suspicion. “Well into the 90s,” she says, “the paradigm [on the health effects of environmental contaminants] was always cancer.” But, as new research was about to show, cancer isn’t the only serious ailment that contaminants can cause.

Ballweg explains:

“This amazing linkage [between dioxins and endo] began with my discovery in 1992 that two rhesus monkeys in a primate colony had died from endometriosis following exposure to dioxins. We paid the university to maintain the monkeys and conducted laparoscopies (the same diagnostic procedure carried out on women and girls) to determine the extent of the disease. That began what has now become a phenomenal interest all over the world in the relationship between dioxins and endometriosis.

“In fact, so much research is occurring, both ours and others, that I’ve had to update our small guide entitled ‘Endometriosis and Dioxins / Information for Physicians, Nurses, and Other Healthcare Professionals’ every two or three months.

“I have been very encouraged recently with the huge interest in a new paradigm related to chemicals. People are really finally beginning to understand that these chemicals cause many health problems in addition to cancer. I am hopeful that CHE can continue its inclusive, pioneering work at reaching out to the public at large with the important message we all need to carry.

“I have been inspired for many years by the courage of people like Theo Colborn, PhD and other scientists, including our own, who persisted despite all of the efforts to stop us in alerting the world to the danger of endocrine disrupters. I also continue to be impressed with inspiring individuals such as Michael Lerner, Gary Cohen and Charlotte Brody.”

Most of all, Ballweg says, she is inspired by the “women and girls who suffer unbelievably and don’t give up.”

Shelby Gonzalez is CHE's administrative coordinator, as well as an experienced freelance journalist.