March to Washington to fight 'Eve's curse'

Sue Dremann

- Palo Alto Weekly

Dr. Camran Nezhat has a vision: that women from all over the world will rise up and demand better health care and that governments will actually listen. And the Stanford Hospital & Clinics physician said he is staking more than $1 million from his own family foundation to make that happen.

Nezhat and a growing contingency of volunteers are organizing a march on Washington D.C. on March 13, which will highlight endometriosis, a gynecological disorder affecting an estimated 200 million women worldwide.

The Million Women March for Endometriosis, or Endomarch, is the spear point of demonstrations planned in 50 countries, he said. The D.C. march will take place at the National Mall.

Nezhat, director of the Center for Special Minimally Invasive and Robotic Surgery at Stanford Hospital & Clinics, said he has seen and treated thousands of women with the disease. He invented videoendoscopy, using video-assisted, minimally invasive laparoscopic surgery to treat endometriosis. The entire surgery is done through a scope and a surgical laser inserted into 1-inch-wide incisions.

Endometriosis is thought to originate in the uterus. The endometrial layer, which sloughs off during menstruation, somehow is spread outside the uterus and into the body. The wayward cells proliferate during the menstrual cycle each month, causing scar tissue, organ damage and debilitating pain. About 50 percent of women who are infertile have the disease; about 80 percent who have uterine fibroids also have the disease, he said.

Nezhat made endometriosis his focus after his mother suffered from what was most likely undiagnosed endometriosis. The disease left her bedridden and passing out from pain.

"We can do something about this condition and raise awareness. Enough young girls and women have suffered. It has become part of their life -- Eve's curse -- and it doesn't have to be so," he said.

So far, 9,000 women and men worldwide have signed up for the march. That may seem a far cry from the million in the event's name, but Nezhat said that number is meant to represent the millions of women affected, not how many will show up. But he would be thrilled if the marches did reach that number.

Organizers started using social media in ways that would make grassroots campaigners proud. The website has video blogs, educational information, spots for "citizen journalists," a flash-mob campaign and information for discount travel to the event. A search function helps marchers find and join teams in every state and country.

March organizers have set up much like a political campaign. They created precinct managers in each state and captains who help spread the word. Ten full-time workers at the headquarters in Nezhat's Palo Alto office help precinct managers create strategies, and there is a branch headquarters in San Jose.

Precinct managers and captains take a Skype interview and receive instructions on how to organize their chapter, he said.

"We are hoping this will be a start of something like Susan B. Komen," the breast cancer foundation, he said.

The march's advisory board includes executives from major medical organizations and endometriosis associations. Dr. Linda Giudice, chairwoman of the Department of Obstetrics and Gynecology at the University of California, San Francisco, is campaign's chairwoman. Three of Nezhat's siblings -- Farr, Ceana and Azadeh Nezhat -- who are also physicians of reproductive medicine, are board members, and Law and Order: SUV actress Stephanie March is the event spokesperson.

Nezhat hopes that by raising awareness, more funding will be appropriated for more research and that policies will also change. He wants screening protocols in schools the same way that children are routinely checked for scoliosis, a curvature of the spine, he said.

"Endometriosis is a totally enigmatic disease. Just when you think you have figured it out, another curve ball is thrown at you," he said. The disease shares many features with non-fatal cancers, although it is not a cancer, Nezhat said. It can metastasize or spread essentially anywhere in the body, including the brain.

Dr. Jill Main, a Stanford obstetrician/gynecologist and fellow at the Center for Minimally Invasive Surgery, is also a march organizer. She wants to broaden recognition of the disease, which typically isn't diagnosed for six to 8 years, she said.

"We really don't know much about it. The more people are aware of the disorder and how it impacts the lives of women, the more it will infiltrate into the medical curriculum. People are seen many times with pelvic pain, and they are brushed away because doctors can't recognize the symptoms," she said.

The march will start at the Andrew W. Mellon Auditorium at the National Mall and features medical panel discussions and keynote speakers. Jumbotrons will exhibit videos streamed of marches from around the world.

The marchers will walk to the National Institutes of Health and other medical agencies, Nezhat said.

Sponsors include The American Society for Reproductive Medicine, the American College of Obstetricians and Gynecologists, the American Medical Association and other societies for reproductive surgery and disease. But the march is being entirely funded by the Nezhat Family Foundation.