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Sick but determined, woman reaches out
LIVER CAUSE OF ‘TOUGH DISEASE’ IS A MYSTERY
Date published: 11/2/2010

BY DONYA CURRIE

On a good day, Sandi Pearlman feels as if she has a mean case of the flu.

On a bad day, she can’t get out of bed. Or she’s overwhelmed by nausea and vomiting. Or she’s in a hospital having her liver and bile ducts cleared and examined.

The 34-year-old Spotsylvania County woman was diagnosed about four years ago with a rare liver and bile-duct disease called primary sclerosing cholangitis.

Bile ducts are tube-like structures that carry bile, which is required for digestion, from the liver to the gallbladder and then the small intestine. If the bile isn’t processed properly, it can be highly toxic.

For people with PSC , symptoms range from annoying to debilitating, and there are few treatment options outside a liver transplant, which doesn’t guarantee the condition won’t return.

Pearlman is like many with the disease who suffer from swollen legs, almost constant itching throughout the body, and crushing fatigue.

“I wake up every single day, and I’m exhausted before the day begins,” Pearlman said from the couch of her home, where she spends hours on her laptop networking with others who have PSC . “Literally, there are days I can’t get out of bed.”

Many people might plunge into depression after such a diagnosis, but Pearlman helps run fundraising and outreach efforts for the group PSC Partners Seeking a Cure. And she somehow manages to find the humor in almost every situation.

“I’m a big believer in ‘Laugh, don’t cry,’” said Pearlman, who shares her house with a large tabby cat named Kissinger who joins her in the shower.

For the upcoming PSC Partners fundraiser, Pearlman dreamed up the idea of a superhero liver who would “Save the Day.”

Her hope, she said, is for research to zero in on more promising treatments and eventually a cure.

“I don’t care if I get cured, but I want my friends to get cured,” she said.

‘A VERY TOUGH DISEASE’

Dr. Konstantinos Lazaridis is a hepatologist at the Mayo Clinic in Rochester, Minn., and specializes in PSC treatment. He said the condition affects about 29,000 Americans. It’s more common in men but can strike anyone starting at about age 4.


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Date published: 11/2/2010










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