MIAMI- Children and families from all over the world will travel to Nicklaus Children’s this month to take part in the Beckwith-Wiedemann Syndrome (BWS) Family Conference from June 24 to June 26. The event brings together families and medical professionals to discuss the latest medical treatments and support offerings for the syndrome, which affects one in 13,000 children.
BWS is a genetic congenital overgrowth syndrome with symptoms that can affect all systems of a child’s body. Many children with BWS are born prematurely and with a large birth weight. These children typically have varying symptoms such as an enlarged tongue, overgrowth of one half of the body, low blood sugar, hernias, liver tumors, or an enlarged heart. Because symptoms can vary in severity, some children may go undiagnosed or receive diagnosis later in life when secondary symptoms arise.
Dr. Chad Perlyn, Pediatric Plastic Surgeon at Nicklaus Children’s Hospital, is one of few in the nation who specializes in the treatment of children with BWS, particularly craniofacial anomalies such as tongue reduction/reconstruction surgery.
The Center for Beckwith-Wiedemann Syndrome at Nicklaus Children’s is an experienced world-leader in the evaluation and treatment of children with BWS. The center offers a comprehensive, multidisciplinary approach to care that addresses the full scope of needs for families of children born with this congenital disorder. For more information, please visit www.nicklauschildrens.org/beckwith.“We have witnessed firsthand how these treatment techniques have changed the lives of children with the syndrome. It not only improves their quality of life physically, but also emotionally by improving their overall self-esteem,” said Dr. Perlyn.