Approximately 50,000 people in the United States are living with Tuberous Sclerosis Complex (TSC), a genetic disorder that causes tumors, or tubers, to form on a person’s organs, primarily on the brain, eyes, heart, kidneys, skin, and lungs. On average, two newborns a day will be diagnosed, or roughly one out of 6,000 births. Nearly 1 million people worldwide have been diagnosed with TSC.
Because of the growing need for TSC research and treatment, Le Bonheur Children’s Hospital has dedicated resources to expand its TSC research program, recruited targeted specialists, clinicians, and researchers, and adopted new technology that can be life-altering for the TSC patients they see.
Because early diagnosis of TSC is vital, Le Bonheur has recruited sought-after TSC experts, including neurologists, dermatologists, and developmental pediatricians, each who specialize in treating the various organs the disease affects.
Building a comprehensive TSC program began, in part, with the hiring of John Bissler, M.D., director of Le Bonheur’s Tuberous Sclerosis Center of Excellence. Le Bonheur leaders recruited Bissler more than two years ago from Cincinnati Children’s Hospital Medical Center.
Leading the hospital’s Pediatric Nephrology group, Bissler focuses on helping his patients manage the lesions growing on their kidneys and finding effective treatments that help slow tumor growth. Researchers have found that two distinct genes have been identified to cause TSC, and only one gene needs to be affected for the disease to be present. Mutations in either gene can cause cells to divide excessively, which can lead to lesions throughout the body.
“Tuberous sclerosis is a disease that can affect every single organ in the body, and we really need to deliver care that is coordinated with every subspecialty; that is absolutely critical,” Bissler says. “Having a place that is centrally located makes it easier for patients and their families who can come through Memphis.”
Building a comprehensive TSC clinic was the goal for James Wheless, M.D., Le Bonheur’s chief neurologist and co-director of Le Bonheur’s Neuroscience Institute. An expert in TSC himself, Wheless was instrumental in recruiting Bissler to join him. In the past five years, nearly a dozen faculty members have been recruited to Le Bonheur to focus on specific subspecialties that help manage a patient’s TSC symptoms. Wheless says he expects the medical staff to grow to 16, which is a benefit to meet the needs of all the patients who visit Le Bonheur’s TSC clinic each year. The program is now attracting TSC patients from across the country and around the world.
In addition to recruiting more TSC specialists and clinicians, Bissler says Telehealth, where Le Bonheur doctors can meet with their patients via computer, smartphone, or tablet, will be a key component for the program’s future.
The goal is simple: Reduce and limit travel time for patients and their families, and give them the ability to speak with their doctors without having to leave their homes. With Le Bonheur’s new Telehealth program, patients will be able to have digital, face-to-face consultations with their doctors no matter where they are in the world.
“I want to build a personal relationship that doesn’t create the unbelievable financial burden for the patients to travel, the loss of work, or babysitters,” Bissler says. “I’ve had patients tell me the bills they paid to see me are 10 percent of their costs for the visit. The travel aspect is huge. I’d like to eliminate that financial burden as well.”
Besides reducing the amount of travel for patients and their families, telemedicine helps facilitate better communication between physicians, Bissler says. No longer will doctors have to sift through or read through numerous emails, faxed documents, or physician notes. Instead, the doctors can easily communicate with each other over the Internet.
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