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CAMBRIDGE, Massachusetts (Reuters Life!) - Cookbook author Padma Lakshmi is hoping to raise awareness and help tens of millions of women who suffer from endometriosis, a painful illness that can cause infertility.
The 39-year-old model and host of reality cooking show "Top Chef," who is pregnant with her first child, has been talking about her two-decade struggle with the disorder, in which tissue that normally lines the uterus migrates to other parts of the body, causing pain and swelling.
At the Massachusetts Institute of Technology (MIT), she said her decision to go public with her struggle was prompted by a desire to help young women avoid the suffering she has experienced.
"I remember school dances that I didn't go to, mid-terms I failed and family occasions that I missed," she said. "Only now do I realize how much of my life was mangled and distorted by this illness."
Lakshmi has become the driving force behind the Endometriosis Foundation of America, which together with researchers at MIT, is pushing to develop new treatments for the illness.
Linda Griffith, professor of biochemical engineering at MIT and former recipient of a MacArthur Foundation "genius grant," has raised $10 million in public and private grants for the new Center for Gynepathology Research to study the illness.
Griffith, who also suffers from endometriosis, which is believed to be a chronic inflammatory condition, said little is known about the illness that affects up to 90 million women worldwide.
Surgery is often required to remove scar tissue that can attach itself to the ovaries, bowels and lining of the abdominal cavity.
"It's like roots in a garden, with the womb being the garden," Lakshmi said. "Endometriosis attaches itself like weeds. You have to clean under the rocks and behind the fence and through the trees and get every last bit of it out."
Lakshmi, clad in a black designer mini-dress, captivated the crowd of MIT students and faculty by relating her story with a mixture of passion and humor.
After multiple surgeries for the condition she is now in the second trimester of her pregnancy and is due to give birth early in 2010.
Griffith said awareness of endometriosis is in its infancy, similar to where breast cancer stood in the early 1970s.
At that time, Betty Ford, wife of President Gerald Ford, was credited with breaking down taboos when she went public with news of her mastectomy in 1974.
Lakshmi hopes other celebrity sufferers, who include comedian Whoopi Goldberg, will lend their weight to her campaign by continuing to speak out publicly.
"I guard my privacy closely, and it seems contradictory when I'm standing here, talking about my period," she said. "But you always have to remember the greater goal. What's more important -- my privacy, or the lives of women? I chose the latter."
Additional reporting by Toni Clarke; Editing by Patricia Reaney