2014 NJCTS Children’s Scholarship Award Essay: “Tourette is a Blessing in Disguise”

This is the essay I submitted to the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) for their 2014 Children’s Scholarship Award contest. I hope you enjoy it!

My grandmother always told  me that every person  was put  on this  earth for a  purpose. Some people bring music to the world or find new  cures for different  diseases. I,  on the other hand,  was placed  on this  earth to  spread tolerance for  those living with Tourette Syndrome.

I could go on about how horrible it is to  have Tourette Syndrome  and how it  has been embarrassing, depressing  and sometimes painful. I could go on  about how it has negatively affected my life. However, I  am past that stage in my life.

Through my work as a Youth Ambassador  and a Patient-Centered Educator, I  have become confident about living life with this disorder  and have become grateful that I  was blessed with the opportunity to make a difference in the Tourette’s community. I will share that Tourette Syndrome has positively  changed my life.

Tourette Syndrome has molded me into the person I  am today. Having this disorder has brought  me to new  and exciting  places to meet amazing and inspirational people. I want to show people the positives over the negatives of living life with Tourette Syndrome.

Having Tourette Syndrome is like living your life  on repeat. Same tics every day, the same sideways looks from others, and the same  need to explain myself over  and over again. Every day I  share my story in order to  educate the world  about the disorder, to clarify that having Tourette Syndrome rarely entails shouting  curse words  and absurd phrases.

I  can truly say that having Tourettes Syndrome is a blessing in disguise. It  has brought me closer to my friends  and family. It  has brought me to make new friendships  and go places I never thought I would go. I  can confidently  say ” Hi my  name is  Grace Hawruk, and I have Tourette Syndrome.”

Teens4TS Showcase: 3 NJ teens educate 120 Yale docs on Tourette

Between them, teenagers Grace Hawruk, Tommy Licato and Tess Kowalski have delivered more than a dozen presentations on behalf of the New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS). They’ve spoken to students, teachers, doctors and residents about what it’s like to live with TS – an inherited, misdiagnosed, misunderstood neurological disorder that affects 1 in 100 kids.

But prior to October 8, each of their presentations had taken place at hospitals across New Jersey. On this particular Tuesday, however, the trio was invited to speak at one of America’s leading institutions of higher learning – Yale University. Their talk about Patient-Centered Medical Education at the Yale Child Study Center not only was well-received by the nearly 120 faculty and trainees of the Yale School of Medicine, it was lauded and encouraged to be replicated – nationwide.

“In an academic clinical research center – one that is the birthplace of much of the important work into the causes and treatment of TS over the past 40 years – it was very important for clinicians and researchers to hear from the teenagers themselves,” said Dr. Robert King, a Professor of Child Psychiatry at the Yale Child Study Center and a key partner of NJCTS. “There is a lot of excitement here about the thought of the NJCTS Patient-Centered Medical Education program being used as a model with children and families affected by other clinical disorders.”

Patient-Centered Medical Education is a unique education program that provides doctors and physicians in training an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety. Continue reading

New Jersey teens headed to Yale to talk Tourette with resident physicians

The New Jersey Center for Tourette Syndrome & Associated Disorders (NJCTS) and its renowned Patient-Centered Medical Education (PCME) Program will take center stage during a”Tourette Syndrome Youth Advocates: A Patient-Centered Education Model in Action” grand rounds presentation at 1 p.m. Tuesday, October 8, at the Yale School of Medicine.

Giving the presentation — a collaboration between NJCTS, the Yale School of Medicine and Yale Continuing Medical Education — will be NJCTS Education Outreach Coordinator Melissa Fowler, MA, MEd; Stuart Green, DMH, LCSW, the associate director of the Family Medicine Training Program at Overlook Medical Center in Summit, N.J.; and three NJCTS peer advocates: 18-year-old Grace Hawruk, 14-year-old Tess Kowalski and 14-year-old Tommy Licato, each of whom has presented multiple PCME grand rounds over the past several years.

Patient-Centered Medical Education is a unique education program for pediatric and family medicine physicians and residents that provides an opportunity to hear directly from adolescents/young adults with Tourette Syndrome and their families. It fosters an understanding of the perspectives, stresses and needs of families living with TS and associated disorders such as OCD, ADHD and anxiety.

The PCME grand rounds format features a discussion led by adolescents/young adults with TS and their families that is augmented by an experienced medical clinician. The learning objectives include identifying and differentiating between the signs and symptoms of patients with varying tic disorder; describing and identifying the most common associated conditions in individuals with TS; giving the latest advances and comprehensive approaches for treatment for individuals with tic disorder; and presenting a patient-centered perspective of life with TS.

The PCME program has been presented at more than a dozen New Jersey hospitals over the past several years and has drawn a wide array of praise, including the following testimonials from Saint Peter’s University Hospital in New Brunswick, N.J.; Newark Beth Israel Medical Center in Newark, N.J.; and Goryeb Children’s Hospital in Morristown, N.J.:

“The attendees gained valuable insight into Tourette Syndrome and came away with a dramatically expanded perspective on the difficulties patients and their families face. I would strongly recommend that you consider scheduling this type of grand rounds at your institution.” — Saint Peter’s

“It was great to learn about the day-to-day life experiences directly from the patient. Both Tommy and Sarah were bright, honest, articulate and courageous young adults. No one left the session unaffected.” — Newark Beth Israel

“Their ability to relate personal struggles and how physicians can improve their skills was well appreciated. It was refreshing to see two young men maintain a sense of humor with what is clearly a life-altering condition.” — Goryeb

More information about Tourette Syndrome, Patient-Centered Medical Education or the New Jersey Center for Tourette Syndrome & Associated Disorders is available by calling 908-575-7350 or by visiting www.njcts.org.

Patient-Centered Medical Education helps doctors learn more about Tourette Syndrome

On Saturday, September 8, 6 teens, their parents, and my mom and I gathered in Bridgewater, N.J., for the New Jersey Center for Tourette Syndrome & Associated Disorders’ Patient-Centered Medical Education Program (PCME) training.

PCME is a program in which children/teens and their families help educate pediatric and family practice physicians, residents and staff at hospitals across New Jersey about Tourette Syndrome. At the training, we reviewed a typical PCME program session.

Now that I have been through the training process, I will have the opportunity to speak at hospitals and medical centers throughout New Jersey. So far, PCMEs have taken place at:

  • Jersey Shore Medical Center
  • Goryeb Children’s Hospital
  • JFK Medical Center
  • Saint Peter’s University Hospital
  • Robert Wood Johnson University Hospital
  • Overlook Medical Center

New ones are planned for Newark Beth Israel Medical Center and Cooper University Hospital. Hopefully, I get to do one of those! Continue reading