W H AT ’ S N E W ?
First-in-state clinic debuts in Columbia Nationwide, tuberous sclerosis complex (TSC) affects 50,000 people; an estimated 850 South Carolinians have this rare genetic condition. Last fall, the Prisma Health Tuberous Sclerosis Complex Clinic was established in Columbia to offer a multidisciplinary approach that effectively treats the disorder and promotes TSC education and research. The only such clinic in South Carolina, it has received designation from the Tuberous Sclerosis Alliance. According to that organization, its “recognition and endorsement provides assurance … that the care provided to TSC patients meets appropriate quality standards for best possible outcomes in this complex and frequently difficult rare genetic disorder.”
Cramer
“We are a multidisciplinary clinic,” said pediatric nephrologist and Clinic Director Monica Cramer, DO, MPH, “and that enables us to follow the latest diagnostic and treatment recommendations and provide care consistent with the highest national guidelines.”
Dr. Cramer continued, “At our clinic, patients see a group of providers at the same visit who can address their multisystemic needs. Patients may begin with mild disease, but other organs can become affected over time. So these patients need to be monitored.”
One of 66 clinics nationwide The TSC Clinic sees a range of patients – infants to the elderly, those recently diagnosed and those living with the condition for years. Patients also exhibit a range in terms of the organ systems affected and the degree to which they are affected. At the clinic, patients regularly see a pediatric neurologist (Cecilia Fernandes, MD, MBBS), nephrologist (Dr. Cramer), neurosurgeon (Catherine McClung-Smith, MD, FAANS), social worker (Asha Purohit, MPH, LMSW) and, as appropriate, a developmental pediatrician (Marjorie Cloninger, PhD, NCSP). Then, patients are referred to pediatric specialists in cardiology, dermatology, ophthalmology and pulmonology as needed. Often, children with TSC present with seizures in the first several months of life, and a neurologist is the first to diagnose and refer them. Other symptoms include
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heart tumors detected in utero, significant developmental delays and a rash typical of TSC. Clinic specialists are willing to partner with referring physicians who wish to stay involved in the care of the patient. “We are happy for patients to remain with the referring doctor,” said Dr. Cramer. “We recommend that we see patients at the clinic annually to make sure they’re getting all necessary care coordinated with other specialists – and to offer them research or clinical trial information.” Dr. Cramer and the other clinic specialists stay abreast of the latest treatments by meeting multiple times a year with Tuberous Sclerosis Alliance experts, attending symposiums and participating in research conferences. The TSC Clinic takes place the fourth Friday monthly at Prisma Health Pediatric Nephrology, 9 Richland Medical Park Dr., Suite 270, Columbia, SC 29203. To learn more about the clinic, call Michelle Sanders, LPN, Clinic Coordinator, at 803-434-3572. For information on TSC resources, visit: • tsalliance.org • tsalliance.org/community-alliance/southcarolina Clinic specialists • Pediatric neurologist Cecilia Fernandes, MD, MBBS • Pediatric nephrologist Monica Cramer, DO, MPH • Pediatric neurosurgeon Catherine McClung-Smith, MD, FAANS • Social worker Asha Purohit, MPH, LMSW • Developmental pediatrician Marjorie Cloninger, PhD, NCSP
“At our clinic, patients see a group of providers at the same visit who can address their multisystemic needs.” – Monica Cramer, DO, MPH
