Pennsylvania woman working to bring awareness to rare medical condition

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A Pennsylvania woman is hoping to bring more awareness to a serious disease after celebrity Amy Schumer recently opened up about her battle with Cushing’s syndrome.

Marie Conley of Elizabethtown has made it her life’s mission to educate others on the disease after her own diagnosis in 2012. She said her life drastically changed when she first started having symptoms three years before the devastating diagnosis.

“I had bouts of bronchitis, pneumonia, strep, shingles, a fractured hip...my hair was falling out, acne,” said Conley.

The rare medical condition also caused her to gain more than 70 pounds amid years of being misdiagnosed and dozens of trips to the ER.

Conley said the rare medical condition is often misdiagnosed because there are so many symptoms. Cushing’s disease occurs when too much cortisol is produced in the body for a long time.

“My story is not unusual,” Conley said.

Comedian and actress Amy Schumer opened up about her private health struggle in a newsletter Friday over criticism about her puffy face. She revealed she had a form of Cushing’s called exogenous Cushing’s syndrome. Schumer said her diagnosis came after taking too much steroid medication.

“This disease predominantly affects women,” said Conley. “At such a vulnerable time to become such a strong opportunity for awareness, I admire her unselfishness.”

After surgery more than a decade ago to help control her Cushing’s, Conley became an advocate. She co-chairs the PA Rare Disease Advisory Board and began a support group called The Conley Cushing’s Disease Fund to help spread awareness.

Today, Conley said she has good and bad days managing her condition.

“I’ve learned to live with it,” she said. “I’m so fortunate because I’ve got a strong family. It’s taken me a long time to get here because I had to become a new better version of myself.”

Luckily for Schumer, her symptoms will eventually subside.

Meantime, Conley’s nonprofit has helped train more than 1,600 medical professionals on how to detect Cushing’s disease early.

The rare health disorder is more common in dogs and horses.

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