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She helped PCOS sufferers help themselves
Tuesday, June 06, 2000 By Johnna Pro, Post-Gazette Staff Writer
If there is anyone who knows about polycystic ovary syndrome, it's Christine Gray DeZarn, founder of the national Polycystic Ovarian Syndrome Association. DeZarn, 35, of Chicago, always had hairy arms and irregular periods, conditions she had learned to live with.
But when DeZarn got married at 26 and a year later tried to get pregnant, she couldn't.
At the same time, she noticed hair growing on her chin. And in a mere 18 months, she gained 70 pounds.
In the subsequent five years, DeZarn resigned herself to hair removal techniques and limited her diet to 1,000 calories a day to no avail. She became obsessed with getting pregnant.
In 1996, DeZarn wandered onto an infertility support group on the Web looking for solace and help. Two months later, she saw a posting from someone describing PCOS.
"I jumped up," DeZarn said. "It had my attention front and center." The symptoms for PCOS were the same ones she had.
By 1997, DeZarn encouraged about 30 of the women with similar symptoms to form their own online support group so they could share what limited information was out there about PCOS.
Within a week, 200 women had signed on.
"I knew we were on to something," DeZarn said.
It was then she decided to take a risk. DeZarn charged $12,000 on her American Express Card and planned a conference in Baltimore.
One hundred women and some of the country's top researchers, including Penn State's Dr. Richard Legro, showed up.
"He showed up at the first conference with nurses ready to draw blood," said Kristin Rencher, the PCOSA's executive director. "He's been an absolute pioneer."
It all makes DeZarn very proud.
Her tiny group of 30 women who chatted online has blossomed into a PCOS clearinghouse for information and an organization with enough clout to be a catalyst for research.
"We used to think of medical care as something we received. As we become so involved, we become participants and then we direct it. That's a revolution that patients find empowering," DeZarn said.
And while the pressures of struggling with infertility and PCOS led to the end of her marriage, DeZarn is optimistic.
She underwent treatment, lost weight, is healthy again and recently remarried.
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