<!--Saxotech Paragraph Count: 10
-->
NEW BRUNSWICK — Amanda Silvers has had a lot of experience talking to doctors.
Since being diagnosed with Tourette syndrome (TS) — an inherited neurological disorder seen in as many as 1 in 100 children, according to the Centers for Disease Control — along with attention deficit disorder and obsessive compulsive disorder, when she was 5, Silvers has dealt with plenty of them.
Silvers, 16, recently spoke to a packed room of 75 more, mostly pediatricians, at Saint Peter’s University Hospital as part of the New Jersey Center for Tourette Syndrome Associated Disorders’ (NJCTS) first patient-centered grand rounds training seminar.
Her message, which has been delivered in the past at much smaller seminars at Robert Wood Johnson University Medical Center and Jersey Shore University Medical Center, was clear: There is a big need for everyone, including doctors, to know more about how to diagnose, treat and react to someone with TS.
“I want the doctors to know what the patients want,” said Silvers, a junior at East Brunswick High School who wants to be a physical therapist. “I want them to be understanding of patients and their needs. My neurologist focuses on my life, rather than my tics.”
Focusing on life is key for Silvers, who told the riveted group of physicians about how she holds in her tics — uncontrollable motor or vocal movements — while at school, then lets them out at home, causing stress for her loving, supportive family.
Suppression and relaxation techniques have helped, but they go only so far.
“I am still the same person, so I don’t want to be singled out,” said Silvers, whose tics include skipping, humming and — when she’s at home — banging her head against a wall. “I try to make myself as normal as possible.”
And that’s where doctors can play a pivotal role.
During the grand rounds, physicians learned how Silvers and her seminar-speaking partner, 21-year-old Steve Lindenbaum of Marlboro, dealt with the experience of initial diagnosis, on quality of life and on encounters with physicians and the health-care system.