NJCTS Youth Development Coordinator Melissa Fowler, M.Ed., leads South Jersey teens in leadership training at Virtua Health and Wellness Center in Voorhees on January 31.
Teens in South Jersey are ready to reach out and help peers and health-care professionals understand the complexities of life with Tourette Syndrome (TS).
TS is a neurological disorder characterized by involuntary sounds or movements known as tics. In addition, the majority of people with TS also have an accompanying disorder like ADHD, OCD, depression or anxiety. As many as 1 in 100 Americans show symptoms of TS, but TS is often misdiagnosed and misunderstood by the medical community.
The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) is working to combat stigma and improve diagnosis through its Education Outreach Program.
“People living with a neurological disorder understand the world in a very unique way,” said Faith W. Rice, NJCTS executive director, “They can describe life with TS in ways that are having a profound effect on the community, healthcare providers, peers and educators – putting a face on an often misunderstood disorder.”
On January 31, 10 local teens and their families gathered at the Virtua Health and Wellness Center in Voorhees for an NJCTS Youth Advocate training session.
“There are families in this part of the state who are struggling without the proper diagnosis and appropriate treatments,” said Rice, “The teens we work with, because of their challenges, have an understanding and compassion far beyond their years.”
The goal is to produce teen advocates who will represent NJCTS in peer in-service trainings at local schools and will present information about TS to health-care professionals. The NJCTS Patient-Centered Education Program trains Youth Advocates to attend hospital grand rounds sessions and educate resident physicians on how to identify and recognize patients with TS.
“I now feel like I have the power to help people with TS on a larger scale,” said one participant, who chose to remain anonymous. “The training helped me realize how much more I can be doing.”
“These teens are uniquely talented, poised and capable of delivering a message that is already making difference across our state,” said Rice, “Our hope is that we will contribute to more accurate diagnosis and a safer environment for kids who are living with TS and other neurological disorders.”
To learn more about Tourette Syndrome, and the programs and services of NJCTS, visit www.njcts.org or call 908-575-7350.
Wow shame my son is 21 years old that would of been great for him we live 10 min from the hospital and he would if been able to meet others in the area with tourettes