Women Fight To Win Attention For PCOS, A Major Cause Of Infertility And Other Serious Health Issues

By Marie McCullough
The Philadelphia Inquirer

WWR Article Summary (tl;dr) Exactly what causes PCOS remains unclear. It is a set of endocrine and metabolic defects, probably caused by one or more genetic flaws. Sufferers have excessive male hormones, particularly testosterone, and rarely ovulate, which may or may not lead immature eggs to form cysts.

The Philadelphia Inquirer

When Sasha Ottey was diagnosed with polycystic ovary syndrome a decade ago, she learned that it affects at least 10 percent of women and is a leading cause of infertility, not to mention a major risk factor for diabetes, heart disease, and high blood pressure.

Yet many people, including doctors, had never heard of PCOS.

Ottey, now 38, quit her job as a microbiologist and founded PCOS Challenge: The National Polycystic Ovary Syndrome Association, which has grown to 50,000 members.

The nonprofit, based in Atlanta, where Ottey lives, is working hard to lift PCOS out of obscurity. And if popular culture is an indicator, the disorder is on the cusp: Millions of viewers have been touched by Kate’s struggles with PCOS-related obesity and infertility on the NBC hit show “This is Us.”

Still, this enigmatic reproductive and metabolic syndrome continues to be understudied, underfunded, and underdiagnosed.

Even the name is problematic, because experts now realize that some women with the syndrome don’t have ovarian cysts and that some with cysts don’t have the syndrome.

“I want a precise name. I don’t like the name. But changing the name is controversial,” said Katherine Sherif, a PCOS specialist at Thomas Jefferson University. “A reason to keep the name is that physicians and women are finally becoming more aware of what it is.”

PCOS Challenge and its allies have helped. Last month, for example, the organization persuaded people at some iconic landmarks around the world, including Calgary Tower, Perth Concert Hall, and Niagara Falls, to light them in teal, the PCOS awareness color.

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