Survivors, families call for action

Clostridium difficile survivors and family members of patients killed by the disease are raising a collective voice in a call for action.

“Like most Americans, I was unaware of C diff’s existence until it killed my mother Peggy Lillis on April 21, 2010,” Christian Lillis said at a recent press conference on C. diff infections (CDI) held by the CDC. “Unlike the majority of CDI victims, my mother was 56 years old and in good health. She had not been hospitalized until she gave birth to my brother in 1976. Her case, like tens of thousands recognized in the [CDC] study, was community acquired.”

There was a history of recent dental care, but whatever the source CDI struck quickly and the patient spiraled downward. “When Mom came down with diarrhea early one Friday morning she thought it was stomach flu,” Lillis said. “She called her doctor that weekend because it was so severe.”

Prescribed a strong anti-diarrhea medication to little effect, Lillis was severely dehydrated and in an ED that following Tuesday.

“It was there that I first heard the words ‘Clostridium difficile,‘” Christian Lillis said. “Less than 36 hours later, despite the hospital’s best efforts, including extensive antibiotics [and] IV fluids, my mother was dead. Our grief was epic. Mom was one of nine siblings from an Irish Catholic family in Brooklyn. It felt like our entire community was in mourning as more than 500 people attended her funeral. We struggled for weeks to understand how our mother could die from a disease we’d never heard of.”

As family members became informed of the disease and its devastating effects, they formed the Peggy Lillis Memorial Foundation to raise awareness, educate patients, and shape public health policy to prevent CDIs.

“The numbers in this new study [with] 29,000 deaths are big, often abstract numbers,” Lillis said. “It’s important to keep in mind the actual people behind them. Every day we hear from citizens whose lives have been changed by C. diff.”

Another prevention advocate is Nancy Caralla, a nurse who acquired CDI occupationally from a patient. Now the founding executive director and president of the C Diff Foundation, Caralla recently described her experience on the CDC’s Safe Healthcare blog (http://1.usa.gov/1x19MWc).

“I am a C. diff survivor. Tragically, our family lost my father from C. diff, too,” she wrote. “I know how fighting a C. diff infection can be exhausting on so many levels. It is a physically, mentally, and financially debilitating infection. It has the ability to steal away a loved one, tear away dreams, create added stress on families, diminish financial nest eggs, eliminate employment opportunities, build geographic mobility limitations, and create tears in even the strongest individuals. All aspects of one’s being are involved in fighting a C. diff infection. This is why I have dedicated myself to raising C. diff awareness worldwide.”