Girls from age 6 to young adulthood came from near and far to Akron Children’s Turner Syndrome Conference last Saturday to learn more about their health and become empowered patients.
Turner syndrome, a condition that affects only girls and women, results when a sex chromosome (the X chromosome) is missing or partially missing.
Affecting approximately 1 in every 2,500 girls, Turner syndrome can cause a variety of medical and developmental problems, including short stature, failure to start puberty, infertility, heart defects, certain learning disabilities and social adjustment problems.
For the more than 100 girls and their parents, some from as far as Pennsylvania, Michigan and Georgia, it was a day full of education – and lots of fun as well.
“We bring in the top medical experts, such as Dr. Michael Silberbach, a pediatric cardiologist and chairman of the professional advisory board of the Turner Syndrome Society of the United States and whose research focuses on the aortic disease and congenital heart disease in Turner syndrome,” said Dr. Cydney Fenton, founding director of the Turner Syndrome Center at Akron Children’s. “The conference is free and there’s a huge networking component to the day as well. We want the girls and parents to make friends, build a support system and keep in touch after they leave.”
While their parents attended medical information sessions, the girls, divided into 2 age groups, played games designed to develop social skills and confidence. They also attended a workshop on how to stay safe on the Internet.
They learned about making healthy food choices from a registered dietitian and got lots of tips on not only surviving but thriving as teens with Turner syndrome.
“Raising awareness about Turner syndrome is important,” said Dr. Fenton. “It may be diagnosed before birth, during infancy or in early childhood. Occasionally the diagnosis is delayed until the teen or young adult years in those who have mild signs and symptoms of Turner syndrome.”
A member of the Turner Research Network of the Turner Syndrome Society of the United States, Akron Children’s has one of the most comprehensive Turner syndrome programs in the country with a complete team of experts covering such disciplines as endocrinology, clinical genetics, cardiology, psychology, adolescent medicine and nutrition.