Meet Sam: A brave 12 year old girl with TS who will be featured in the documentary

Sam is a very brave an intelligent 12 year old girl. Sam has a killer hit in volleyball, a passion for art and writing, a knack at learning to play the guitar, and Tourette's Syndrome. Sam and her younger brother Andrew will both be featured in my upcoming documentary, Out of Our Control. What is it like for Sam, living with Tourette's? She has answered some questions that I asked her to help us find out.

When were you diagnosed and what was it like? 

I was diagnosed about the age of 7 turning 8. It was scary because we did not know what Tourette Syndrome was but also we felt better knowing there was a name for what I had.

What are some of your tics? 

I have many of them that come and go. I throw my arms out, crack them and stretch them. I bite the tip of my tongue, smack my head in a downward thrust, stretch my neck back, crack my back and twist at the waste, I crack my elbows, neck and knuckles. Oh and I also clear my throat, hum, and grunt.     

What associated conditions do you have? 

I have OCD, tics of the mind. I have sensory issues because I do not like to be touched. I get basilar migraines and I have anxiety.  

Do you tell others about your condition? 

I use to hide it and sometimes I still do. It depends on where I am and with who. I tic all the time at home with my family and close friends. I just started telling other kids about having TS and so I am ticcing more in school but I usually try hard to stop the tics at school or in public places. I am not always able to and sometimes I get worse or sometimes I try to make my tics look normal.

What's the hardest part about living with Tourette's Syndrome? 
Not being able to have control over the tics. They can really cause a lot of pain and I just want them to stop because it hurts so much but I cannot make it stop. Its hard to go to public places because my tics get worse and people just look at me. Sometimes people don't believe that TS is real.

Do you think there is a positive side to having Tourette's?  

I have met so many people because of having TS. I have a few great friends and we help each other. My mom has met a few other parents with children who have TS and they have become great friends too. I have been in a few studies too, maybe one day I will be apart of a cure.

What do you want others to know about Tourette's? 
I have tics every single day. Some days I don't notice them as much while other days I am in so much pain. Its not always easy to be upbeat and happy when your hurting but I try. I just want people to learn about TS because too many people don't know what it is or they think they do and its way wrong.

What advice can you give other kids who are newly diagnosed with Tourette Syndrome?
 I think I would tell them about all the other kids who have it and how its nice to meet others like you. Its not easy but I understand. Its not something anyone can fix but its nice to know others who have it. Its worse when you feel alone or misunderstood. 

To hear more of Sam's story and the stories of others like her, keep an eye out for the upcoming documentary, Out of Our Control. The documentary features 17 people just like Sam who live with TS every day and their opinions on what it's like to have it.