Would you like to share your TS story? If so, please send a private message to my Facebook page or send me an e-mail at firstname.lastname@example.org. Please answer these questions (by either typing them out or videotaping) and send a picture or two to go with it! Then I will post your story on this page!
Q: What is your name & how old are you?
A: My name is Kristen, I am 17 years old, and I am from Pennsylvania.
Q: How long have you had Tourettes?
A: I was diagnosed with Tourette Syndrome 3 years ago, after my tics suddenly got more severe than they ever were. I had mild tics my whole life, but after a strep infection, they became very severe. I have a dual diagnosis of Tourette Syndrome and PANDAS.
Q: What kind of tics do you have?
A: Like everyone with TS, my tics change all of the time. My most common tics are head shaking, eye blinking, eye rolling, coughing, and moving my arms randomly. Other tics I have had include coprolalia, throat clearing, jumping, rolling around, and stomping. There are honestly too many to count!
Q: Do you have any associated conditions?
A: I have Tourette’s, OCD, anxiety, PANDAS (Pediatric Autoimmune Disorders Associated with Strep Infections), and some sensory problems. Sometimes they have a bigger impact on my life than the TS does!
Q: What’s life like living with TS?
A: Life with TS has given me a new perspective on life. I am also on Youtube (my username is K972411) and there you can find a more detailed list of what has been going on the past few years since my TS got more severe. Without medication, I am unable to go to school/work; however, with medication, I am able to function like a pretty “normal” kid. Sometimes my tics still get bad and it can get in the way of being able to do my school work or play sports.
Q: What advice can you give others that are newly diagnosed?
A: Some advice I would give people who are newly diagnosed with TS is to stay positive and reach out to other people who also have Tourette’s. You can do this on Facebook, youtube, or in person. Sometimes it helps to be able to ask questions to people who can actually relate. The other piece of advice I have is to not be afraid to let people know you have Tourette syndrome. You are who you are!!
Q: Whats the hardest thing about having TS?
A: The hardest thing about living with Tourette syndrome is that my body and brain are constantly exhausted from ticcing and the associated conditions. It is important to look at the positives, and realize what good things TS has brought into your life!
Q: What do you think others should know about TS?
A: Other people need to realize that we are not in control of our tics, and pointing them out or telling us to stop makes our tics worse. Understand that we don’t like it any more than you do!!!
Q: What are your strengths and what do you like to do?
A: My strengths are school work. I actually partially give my OCD credit for this lol. I always try very hard in school to get all As. Outside of school, I like to work (I am a waitress), play sports, and hang out with my friends!
Q: What are your dreams & goals in life?
A: My goals in life are to go to college, study science or math (chemistry?), and possibly get a job in the pharmaceutical industry.