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Tourette's Syndrome Part 2: Survivor Stories!

Written by Alexandra Fuhs and Harshita Parmar


Hi everyone! This is the second article in our Tourette's Syndrome article series! Before you read this article, please go ahead and read the part 1 article for some background info. This article focuses on individuals living with Tourette's syndrome, and how they are thriving and inspiring others through their lives.



Experiences/People’s Stories

Sutie Madison, now an artist, choreographer, and director, first experienced various tics at the early age of 8 and was diagnosed with Tourette’s at the age of 13. When she was studying at Arcadia University, she was inspired to use her tics to develop video performances by associate professor Alan Powell. She learned to embrace her tics, changing her perspective towards it, viewing them as kinetic and moreover, a form of dance. Sutie also encourages the use of physical and vocal tics as inspiration and a foundation for choreography.



In 2011, she founded an organization called Band of Artists, made up of educators, performers, presenters, and scientists. This team actively strives to educate the public on numerous neurological disorders, as well as produce various pieces of art.




A 10-year-old girl named Emma and her brother Charlie were both diagnosed with Tourette’s. Although Emma was a scared victim when she was young, she has now become an advocate for Tourette’s, helping others with Tourette’s. Post her trip to Washington D.C, she calls it an ‘eye-opening experience’ because she was able to meet many children and families who have been associated with Tourette’s in some way, similar to Emma. Through this opportunity, she has also had the chance to communicate with various healthcare professionals, health resource professionals, medical students, and children. Emma continues to impact people diagnosed with Tourette’s by allowing them to see this disorder in a different, more positive outlook, and not as a disability or shortcoming of any sort.



Similar to Emma’s story, a young boy named Lucas developed tics in third grade and this was recognized by his mother, Linda. His parents continuously tried to find a doctor with TS awareness, and after much effort, he was finally diagnosed with Tourette Syndrome in addition to ADHD (Attention- Deficit Hyperactivity Disorder). Although he was eventually diagnosed, he only began to receive effective treatments at a very late age. Due to this, he suffered from poor academic performances; “from being a straight A student to not passing classes in middle and high school.”



Fortunately, after years of experimenting with different forms of treatment such as different medications, nutritional planning, and neurofeedback, which is a type of biofeedback which teaches self-control of the functions of the brain by measuring brain waves while recording a feedback signal. A friend in their TS community recommended a TS family education program where Lucas’ parents were introduced to a different TS treatment- Comprehensive Behavioral Intervention for Tics (CBIT) behavioral therapy, a type of therapy specifically designed to help with tics. It enables a person to be more aware of their behaviors and learn how to modify his/ her behavior carefully and properly. Within two days of starting this therapy, Lucas’ first tic was gone. Now, at the age of 15, Lucas is finally tic- free, and through this behavioral therapy, he is learning to handle tics more effectively.



Lastly, the popular, renowned singer-songwriter Billie Eilish also has Tourette Syndrome. She has grown up with this disorder, and although she has it, her tics are mainly physical, not verbal, and additionally not very noticeable. For example, she experiences tics such as shoulder shrugging, looking upward, and blinking rapidly. Despite this, she describes her experience of having Tourette Syndrome ‘a complete misery’ because everyday tasks become a lot harder for her; certain things aggravate her tics and causes them to be more intense. Even though she confirmed her diagnosis in response to compilations of her tic videos circulating the internet, she contentedly admits to having the condition and spreads awareness about it, which can ultimately encourage people diagnosed with TS to see themselves in a positive manner.


Thank you for reading, and I hope you enjoyed our series on Tourette's Syndrome! If you liked this article, you may like our Myths about Women's Health article, linked here.


If you are interested in writing articles with our Writing Committee, or have any questions and comments regarding our blog, please feel free to email anushasoni241@gmail.com.


See you next time,

Alexandra, Harshita, and the Writing Committee:)



References:


Wilson, Samantha. “Billie Eilish's Tourette Syndrome: Everything The Singer Has Said About Her Disorder Through The Years.” Hollywood Life, 26 March 2021, https://hollywoodlife.com/feature/billie-eilish-tourette-syndrome-4358494/


“Real Stories From People With Tourette Syndrome.” CDC, https://www.cdc.gov/ncbddd/tourette/stories.html


“Tourette Syndrome - Patient Story - Jefferson Health - Abington.” Abington - Jefferson Health, https://www.abingtonhealth.org/services-specialties/brain/patient-stories/tourette-syndrome/


Malli, Melina, and Rachel Forrester. “Billie Eilish and Tourette's: our new study reveals what it's really like to live with the condition.” The Conversation, 8 July 2019, https://theconversation.com/billie-eilish-and-tourettes-our-new-study-reveals-what-its-really-like-to-live-with-the-condition-119570


Mansourian, Marjan. “Neurofeedback: A Comprehensive Review on System Design, Methodology and Clinical Applications.” NCBI, https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4892319/


“What Is Tourette Syndrome?” Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 20 Apr. 2021,


Storm Creative, West Sussex. “Co-Occurring Features and Conditions.” Managing TS and Associated Conditions, https://www.tourettes-action.org.uk/74-managing-ts--associated-conditions.html


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