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The Coast is Clear. Come out of hiding!

CEO discloses lifelong epilepsy

It’s not easy keeping a secret in this town, especially when you play at the level of power that Carol Fulp has reached. But Wednesday night at Fenway Park for the CURE 2012 Boston Benefit, in a room filled with senators, CEOs, and power brokers, one of Boston’s most respected women revealed a secret she’s lived with since she was 7 years old. Fulp has epilepsy.

The CEO and president of The Partnership, Inc., and a former senior vice president at John Hancock Financial, Fulp also served recently asPresident Obama’s US representative to the 65th session of the General Assembly of the United Nations.

“People like me who have epilepsy and respond to treatment know full well the negative stigma of epilepsy,” Fulp said in her speech. “So we don’t disclose we have the illness. As a result, we don’t advocate — we don’t lend our voice. And as such, the public doesn’t always hear the truth, the facts from those who are living productive lives with epilepsy. And for me, well for 50 years, I didn’t tell people I had epilepsy. “

Fulp spoke after Julia Barnicle, who also suffers from epilepsy, and is the daughter of Bank of America executive Anne Finucane and longtime journalist Mike Barnicle. Fulp told the audience she first had staring spells as a girl and said teachers took away her lead role in the class musical. She said medication has kept her seizure-free for long stretches, but that her last serious one nearly killed her. She was in the car with her husband, Bernie Fulp, while he drove them along a cliffside road on Martha’s Vineyard, when she next woke up in a hospital. She had seized during their drive and said if she had been behind the wheel they would have crashed.

During her UN work she met David Axelrod, Obama’s chief political strategist, whose daughter has epilepsy and whose wife, Susan Axelrod, cofounded CURE (Citizens United for Research in Epilepsy). Fulp said only her inner circle knew her secret, but she revealed it to the Axelrods.

“He took my hand in his,” Fulp said, “and he thanked me for telling him and asked if I was OK.”

After she closed by saying, “Tonight, Julia and I stand here and address you as the lucky ones,” the audience stood and clapped for two minutes.

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1 Comment

  1. Thank you to Carol Fulp for speaking about epilepsy and being brave enough to share your story. I’m the parent of a child with epilepsy and I hope one day there won’t be such a stigma. The only way to get past it is to talk about it. Thank you so much, you and others will make it easier for Benjamin as he grows up and makes his way in the world.

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