Upstate cystic fibrosis partnership recognized by national group

GREENVILLE, S.C. – The Cystic Fibrosis Foundation and its South Carolina state chapter honored Prisma Health Children’s Hospital and its pediatric cystic fibrosis program for their outstanding partnership in promoting cystic fibrosis (CF) awareness, fundraising and general advocacy for the patients and families they serve.

Only 14 of the 200-plus national CF accredited programs received these partnership awards from the Cystic Fibrosis Foundation, which oversees CF care for thousands of individuals through their care center network and through their work to advance CF research, quality improvement and clinical care.

“This award recognizes the outstanding partnership between our pediatric CF program and our state CF Foundation chapter,” said Steven M. Snodgrass, M.D., director of the cystic fibrosis center at Prisma Health Children’s Hospital–Upstate. “Our extraordinary community partnerships have made possible extraordinary patient care, and we’re very grateful for all the work done by so many.” Annually, approximately 80 patients with CF are cared for in the Children’s Hospital multidisciplinary program that provides patients and families with access to nutritionists, social workers, respiratory therapists and other services needed to care for a chronic life-long disease.

Cystic fibrosis is a genetic disorder that causes the production of abnormally thick mucus, leading to blockages in the lungs, intestines and pancreas, which results in chronic respiratory infections and nutritional insufficiencies and the need for life-long therapies.

Children with cystic fibrosis benefit enormously from early intervention, Snodgrass said. The earlier a child is diagnosed and cared for at an accredited cystic fibrosis center, the better the child’s outcomes will be over time.

About 30,000 people in the United States have cystic fibrosis, according to the CF Foundation registry. More than 75 percent are diagnosed by age two, and approximately 1,000 new cases of cystic fibrosis are diagnosed in the country each year. In Caucasian individuals, CF may affect approximately one in 3,000 births.

This includes the family of Chris and Hope Sielicki of Easley. Their daughter Lauren, six, was diagnosed with CF as an infant. They said the team at Prisma Health Children’s Hospital has been wonderful to work with.

“They care about Lauren and the rest of us as family, not just as a patient,” the couple said. “We know we have one of the best cystic fibrosis care centers in the country, and we are overjoyed they are receiving the recognition to match.”

“We’re especially grateful to Prisma Health’s CF center staff for being alongside us through this journey,” said Mrs. Sielicki. “Because of their dedication and their personal investment, we know that they want a cure as much as we do.”

Lauren is doing well, despite it being cold and flu season which can be particularly hard on those with CF, said her mother. Lauren takes six different medications daily, in addition to three neubulizer treatments, and uses a specialized vest twice a day to basically shake her chest so that her mucus can stay loose.

“Every new treatment or medicine Lauren is given, she takes like a champ and rarely complains,” said Mrs. Sielicki. “Lauren’s just like any other first grader; she’s always on the go, and, when she’s not, we know she’s not feeling good.”

Dr. Steven Snodgrass and Lauren Sielicki at a CF awareness event. Lauren, now six, was diagnosed with CF as an infant. Learn more about CF on our website.

 

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