Teenagers Michael Cannizzaro and Tess Kowalski detail their experiences in how a diagnoses, or lack thereof, has affected their life at home, in school and in their communities.
FREEHOLD – Many children and families affected by Tourette Syndrome struggle with the process of getting an initial diagnosis. Some diagnoses take as long as 7 years to be made, according to the Centers for Disease Control and Prevention.
In the case of Michael Cannizzaro, a 17-year-old sophomore at Hunterdon Central High School, it took 5 years and multiple trips to different doctors and specialists before receiving the proper diagnosis of TS – a misunderstood, misdiagnosed, inherited neurological disorder that affects 1 in 100 children and is characterized by vocal sounds and/or motor movements known as tics.
“My pediatrician recommended seeing three specialists to rule out other issues and help to find a diagnosis,” said Cannizzaro, who on December 28 told a panel of pediatric and family practice residents at CentraState Medical Center that he visited a neurologist, ophthalmologist and a therapist. “I was first diagnosed with ADD by the neurologist, but the ophthalmologist found no issues with my eyes. I found the therapist helpful, but I still had no diagnosis until I was finally diagnosed with TS by a neurologist nearly five years later.”
Cannizzaro, along with 13-year-old Peer Educator Tess Kowalski, addressed the residents and physicians as part of the New Jersey Center for Tourette Syndrome & Associated Disorders’ (NJCTS) Patient-Centered Medical Education program, which aims to educate medical professionals on what it is like to live with Tourette Syndrome at school, at home and in the community. Collaborative Partnerships for the Tourette Syndrome Community Photo by NJCTS Michael Cannizzaro and his mother, Liz, talked about Tourette Syndrome with family practice resident physicians at CentraState Medical Center in Freehold on December 28. Kowalski was diagnosed with TS when she was 5 and has made numerous presentations about TS over the past year to schools, houses of worship and at hospitals. Tess said she and her family sought treatment at NJCTS’ TS clinic at Rutgers University and found it very helpful. Her father, Tim, noted that once the diagnosis was made, it was important to have a place where the whole family could receive help.
Tess’ story highlighted the benefits of early diagnosis and the establishment of an environment (in her case, homeschooling) in which she could effectively learn and confidently develop healthy relationships with peers and with herself. The CentraState physicians were impressed and found the presentation very effective, according to Tim Kowalski.
“They (the resident physicians) walked away with a better understanding of what TS is and were provided examples of symptoms that may present in patients,” he said. “This, along with an awareness of what NJCTS does, will hopefully lead to more families getting early diagnosis and access to support.”
“The residents and physicians were attentive, had thoughtful questions and expressed thanks and praise to Tess and Mike for the description of their experiences with the medical community in the diagnosis and management of TS, their commitment to advocacy, and their bravery in presenting,” Tim Kowalski added.
The goal of the Patient-Centered Medical Education program is to help residents and physicians enhance their understanding of the perspectives, stresses and needs of those with neurological disorders such as TS to improve patient encounters. NJCTS works with hospitals throughout New Jersey to present these education sessions. In the past year it has facilitated presentations at:
- Robert Wood Johnson University Hospital in New Brunswick
- Bristol-Myers Squibb Children’s Hospital in New Brunswick
- Overlook Medical Center in Summit
- JFK Medical Center in Edison
- Goryeb Children’s Hospital in Morristown
- Saint Peter’s University Hospital in New Brunswick
- Jersey Shore Medical Center in Neptune Newark
- Beth Israel Medical Center in Newark
- Cooper University Hospital in Camden
The next presentation will take place Friday, January 25, at UMDNJ in Newark. More information is available by calling 908-575-7350 or by visiting www.njcts.org.