Hackensack UMC to Host Symposium on Turner Syndrome

HackensackUMC to Host Symposium on Turner Syndrome

Disorder is the second most common genetic condition in girls

The Molly Center for Children with Diabetes and Endocrine Disorders and the Division of Genetics, in conjunction with the Turner Syndrome Foundation, are hosting a symposium for families and girls with Turner Syndrome on Saturday, June 7, 2014 from 9 a.m. to 12 p.m. in the Hekemian Conference Center at HackensackUMC.  The purpose is to raise awareness about Turner Syndrome, which is a genetic condition that affects females in which they do not have the usual pair of X chromosomes.

“Turner Syndrome can result in numerous physical, cognitive, emotional and social complications,” said Helio Pedro, M.D., section chief, Genetics at the Joseph M. Sanzari Children’s Hospital at HackensackUMC. “The most common health problems involve congenital heart disease, kidney variations, thyroid disease, diabetes, delayed puberty, hearing deficits, osteoporosis and infertility.”

It is estimated that the disorder affects one in 2,000 females; 1,000 baby girls are born with the Syndrome annually.  If not identified in the neonatal period, Turner Syndrome is often detected during a girl's first few years of life due to short stature, with an average untreated height of four feet seven inches and frequent ear infections.

The Joseph M. Sanzari Children’s Hospital is developing a multidisciplinary Turner Syndrome Center, and will include all specialists affiliated with HackensackUMC who have an interest in caring for girls with Turner Syndrome and addressing their complex needs.

“Through the center, we will be able to offer comprehensive follow up for girls with Turner Syndrome,” said Amy Chartoff, A.P.N, of the Molly Center for Children with Diabetes and Endocrine Disorders, Joseph M. Sanzari Children’s Hospital.   “The earlier we see the girls and begin administering treatment and the more closely we follow them, the better off they will be in the long run. Early intervention has been proven to produce long-term positive outcomes.”

The Turner Syndrome Symposium will include three speakers from HackensackUMC who will discuss the following topics:

·         The Genetics of Turner Syndrome; Sarah Parisotto, M.S., certified genetic counselor

·         The Kidney Manifestations of Turner Syndrome; Leigh Ettinger, M.D., pediatric nephrologist

·         Heart Disease related to Turner Syndrome; Robert Tozzi, M.D., pediatric cardiologist 

In addition to the symposium, two other workshops will be offered on June 7th at HackensackUMC and are as follows:

Girls with Turner Syndrome:  from 9:30-11:45 a.m., social work and child life specialists will be offering an opportunity for girls with Turner Syndrome, ages 5 -17, to meet and connect with each other.

SIbShops:  from 9:30 a.m. to 12:00 p.m., this event is for siblings of girls with Turner Syndrome or other chronic diseases.

For more information or to register for the Turner Syndrome Symposium at HackensackUMC, please visit the Turner Syndrome Foundation’s website:  www.turnersyndromefoundation.org/events-patient.html.