KU School of Medicine-Wichita

Embark 2017

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14 EVERYDAY 74 INFANTS ARE DIAGNOSED WITH PKU . . . . . . . . . . . . . . . . . WAS IN THE EARLY 50s DIET pku FIRST CHILD TREATED WITH treatment and follow-up," he said. "We chose these four diseases because we felt they could be safely and effectively managed, and it would save families from frequent trips to specialists in Kansas City." "This is no small thing for families," he said. "We're gaining experience and hope to use it to expand care to more remote areas of Kansas." KU Wichita Pediatrics' addition of a metabolic geneticist is will also open new opportunities. "I'm confident that the expanded partnership will drive further growth and cooperation. Not having a metabolic specialist on site has limited how much we can use the resources that are offered through televideo." "It's daunting to build a program from scratch," Sivamurthy said. "But we've sown the seeds that will give the new geneticist a running start." Continued on page 16 The KU School of Medicine-Wichita's pediatrics department has long had a clinic for children with PKU deficiency, a genetic condition that prevents the breakdown of phenylketonuria, a building block for essential proteins. But the more Sid Sivamurthy, M.D., worked with PKU patients, the more he came to realize a need for expanded care of metabolic conditions. The Kansas Department of Health and Environment (KDHE), which tracks genetic conditions, provided grant funds to set up the clinic, which will operate a half day each month. Sivamurthy credits KDHE for their partnership to offer patients expanded local care. In addition to PKU, the clinic will see patients with galatosemia, MCAD, and biotinidase deficiency — other conditions in which the body does not effectively produce or process essential substances. "These are not acute metabolic conditions, but they do require long-term . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Forging partnership to expand care for kids PEDIATRICS KU WICHITA

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