Dunaif blames the syndrome's low profile on its name. "It has the word ovary in the name and that has led people to think it's just 'female' troubles and nothing important," she said.
PCOS gets its name from the small ovarian cysts found in the first women studied, though not all women who suffer from PCOS have these cysts. Dunaif would like to rename the syndrome "Syndrome XX" to bring it into the spotlight.
After Dunaif began treating Donnelly with medication for insulin resistance - which had caused her rapid weight gain -- Donnelly's excess pounds dropped off and she was able to become pregnant. "If I had known about this sooner, my life would have been entirely different," Donnelly said.
She couldn't take the medication when she was pregnant or nursing, however, so her weight soared 80 pounds with each pregnancy. At one point, she weighed 280 pounds. Of her struggle with PCOS, she said, "It's like having a battle with my body at all times."
Now a 40 year-old mother of three from the Chicago suburbs, Donnelly worries about her children inheriting the disease. She realizes many of her relatives -- who developed diabetes as adults -- likely had PCOS.
Source: Northwestern University