On July 11, Texas Children’s Hospital and Hope for Hypothalamic Hamartomas hosted an educational conference to empower patients and their families affected by a rare and often devastating brain condition.
Hypothalamic Hamartoma (HH) is a noncancerous tumor of the hypothalamus that causes uncontrollable seizures, early puberty, hormonal imbalances and cognitive and behavioral problems. Seizures usually begin in infancy, most often as frequent, uncontrollable laughing spells (gelastic seizure), before different types of seizures emerge.
Texas Children’s neuroscience team along with Dr. Daniel Curry, Texas Children’s director of pediatric surgical epilepsy and functional neurosurgery, and Dr. Angus Wilfong, medical director of Texas Children’s Comprehensive Epilepsy Program, helped organize the HH Family Conference which featured insightful presentations from 11 experts from across the country who specialize in the diagnosis and treatment of neurological diseases.
The conference provided valuable information about exciting research on the horizon and potential new treatments for HH patients, with the hopes of empowering families and caregivers to make educated treatment decisions for their loved ones.
Several guest speakers from Texas Children’s included Drs. Wilfong, Maria Grosch, Marcia Komlos-Kukreja, Michael Quach, Varina Wolf, and Curry, who delivered a presentation on laser ablation technology, a surgical procedure he and Wilfong helped pioneer to treat seizures in children with epilepsy and HH.
Ranked no. 2 in neurology and neurosurgery by U.S. News & World Report, Texas Children’s is the first hospital in the world to use this real-time MRI-guided thermal imaging and laser technology to destroy brain lesions that cause epilepsy and uncontrollable seizures. Unlike a craniotomy – which removes a larger area of skull bone – the MRI-guided laser probe uses a much smaller pathway through the brain to reach a lesion. This minimally invasive surgery has resulted in promising outcomes for HH patients, with 78 percent of them being able to live seizure-free.
“Several of our families have been treated by this new laser ablation surgical procedure that Drs. Curry and Wilfong have worked hard to perfect on our high-risk patients,” said Lisa Soeby, president of Hope for Hypothalamic Hamartomas. “We are thankful for their dedication and passion for what they do and look forward to partnering with Texas Children’s Hospital in the future.”
In addition to providing informative sessions, the HH Family Conference also offered opportunities for families to meet others like them, who are impacted by this rare but treatable condition.