Children’s Healthcare of Atlanta Neurosciences Program recently opened a new clinic for tuberous sclerosis. Previously the closest facility to treat tuberous sclerosis was located in Boston.
Tuberous sclerosis is a rare, multisystem genetic disease that causes benign tumors to grow in the brain and on other vital organs, such as the kidneys, heart, eyes, lungs and skin. A combination of symptoms may include seizures, developmental delay, behavioral problems, skin abnormalities, and lung and kidney disease.
“One in 6,000 children is born with tuberous sclerosis every day. Therefore, the care for these children is very specialized,” Robert Flamini, M.D., Medical Director of Children’s Children’s Epilepsy Center said. “In most cases, parents have to schedule appointments with different doctors in their city because this complex disease affects several parts of the body.”
In January 2010, in partnership with the Tuberous Sclerosis Alliance (TSA), Children’s opened the Tuberous Sclerosis Complex (TSC) Clinic. The first of its kind in Georgia, this virtual clinic coordinates annual visits with up to seven different physicians to ensure patients with TSC have access to pediatric specialists. This thorough review is provided to the patient family by the TSC medical director and also is sent to the patient’s primary care physician.