FAP Gardner's Syndrome strikes several members of same family - WAFF-TV: News, Weather and Sports for Huntsville, AL

FAP Gardner's Syndrome strikes several members of same family

A Decatur family is stepping up for an experimental treatment for a cruel family curse. (Photo: MGN Online) A Decatur family is stepping up for an experimental treatment for a cruel family curse. (Photo: MGN Online)
DECATUR, AL (WAFF) -

Lucy Raths Schrimsher said four out of ten siblings in her family have a genetic malady that causes polyps in the colon and elsewhere in the body: two boys and two girls.

"I was diagnosed when I was between 5 and 6," said Schrimsher. "'Cause my mother had it, have familial polyposis, Gardner Syndrome... "

Gardner Syndrome is a subtype of FAP.  Schrimsher had polyps removed then and became a yearly patient at Vanderbilt.

"Many such patients end up going to the hospital with polyps and pain," said Schrimsher. "You can get cranial lesions, which are just knots on your forehead type thing."

Schrimsher had most of her colon removed at age 19. "Then my polyps got worse and it's not just in your colon it's in your esophagus."

At age 28, she had the rest of her colon removed. "They put a temporary ilestomy, not colostomy, but ilestomy which is on the other side. And three months later I went back and had that all re-connected."

More recently, a tumor on the pancreas was removed. Her survival chances are better because she was pre-cancerous. This can lead to cancer in the digestive track or surrounding organs.

"We're linking into being part of a study with Johns Hopkins this year," said Schrimsher. "They've tried it on a small study for a herb that will shrink the polyps. It's a blind study basically. We're just hoping that we get the real thing and not the placebo."

She is hopeful this condition is something her grandchildren will not have to face.

Copyright 2013 WAFF. All rights reserved.

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