Kristin's Tourette Syndrome Story

Kristin's Tourette Syndrome Story:

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?
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.

Steff's Tourette Syndrome Story

Steff's Tourette Syndrome Story

Q:What is your name & how old are you?
A: Steff & 23.

Q: How long have you had Tourettes?
A:I was diagnosed when I was 7.

Q: What kind of tics do you have?
A: Most facial, some arm spasm like twitches .. when I type, like now...my hands twitch alot. When there is something wrong(toothache, knee pain, headache) my tics localize to that area. I've had a wink that I have had since I was diagnosed. That gets interesting sometimes.

Q: Do you have any associated conditions?
A: I have OCD, am mildly BiPolar, & have anxiety.

Q:What's life like living with TS?
A: It's life. I take each day for what it is & hope tomorow will be good too. My tics are worse at night, or when I am stressing and my anxiety picks up, other than that, I usually get by okay.

Q: What advice can you give others that are newly diagnosed?
A: Live your life! I am a regular person, I just move around more than others. I hate people on any TS site that hate the world. Yes, its rough, but it's amazing also.

Q: Whats the hardest thing about having TS?
A: Meeting new people or getting a new job. People are so quick to judge. Seeing other people get down on themselves because of the condition.

Q:What do you think others should know about TS?
A:I am just like you, I just move more. You cant catch it, I cant help it, get over it.

Q: What are your strengths and what do you like to do?
A: I clean, alot. I also like to exercise. Not just run, but actually exercise. I also do alot with my dogs.

Q:What are your dreams & goals in life?
A: To help others with TS. To have a lovely family, with kids. They may or may not be born with Tourettes. But we will take that journey in stride when it comes.

Seth's Story

Seth's Story 

Q:What is your name and how old are you? 
A: My name is Seth Tucker, I am 29 years old, and I live just outside Washington DC.

Q: How long have you had Tourette Syndrome? 
A: I've had Tourette's since I was 7 years old.

Q: What kinds of tics do you have?
A: My most common tics are my throat clearing and facial grimaces. I also have frequent arm/neck/leg movements, and a few tics that cause me to hit myself or bang my head into objects. Some tics come and go and they vary in frequency and severity.

Q: Do you have any associated conditions?
A: I have been diagnosed with OCD, ADHD, anxiety, auditory processing disorder and sensory processing issues.

Q:What is life like for you living with Tourette Syndrome?
A: While working I usually don't have an issue with my Tourette's. By using CBIT and medication I am able to generally suppress my tics. When I get home most of the tics explode out of me and I've broken furniture in the past. I've learned to take off my shirt and pants, wrap myself up tightly with a blanket and just let my tics go. It's much safer for me as I don't hurt myself as much.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: Learn to laugh and let the little things go. Life is too short and awesome to let something bother you for long,
especially if it's something you can't control.

Q: What is the hardest thing about living with Tourette Syndrome?
A: For me it's watching others suffer with it (which is why I got involved with the TSA). While I have a few extreme tics, for the most part it's the least challenging part of my day.

Q: What do you think other people should know about Tourette Syndrome?
A: The way we perceive things aren't always the way they are. If we think a kid is good we'll notice all the good things they do, if we think they're bad we'll notice all the bad things they do. By choosing to see someone with Tourette's as a person and not some strange thing or poor soul suffering with a disorder, you will see all the amazing qualities that person has (and hopefully they will too).

Q: What are your strengths and what do you like to do?
A: I love working with kids and helping them see the good in themselves. I work with kids who are too often told they can't or that they're stupid by those around them. I love it when they get to see just how special and amazing they really are.

Q: What are your goals in life?
A: I'm living my dream, I'm working to make the world a better place one kid at a time. I've managed to get my professional life in order and am currently pursuing my National Board Certification for Teaching, something that only 3% of teachers have been able to accomplish. I'd like to start putting my social life in order as its always been an area of weakness for me and I need to learn how to start thinking about myself for a change.

Martyna's Story

Martyna's Story 

Q:What is your name and how old are you? 
A: My name is Martyna, I'm 15 years old, and I'm from Poland. 

Q: How long have you had Tourette Syndrome? 
A: I was diagnosed with Tourette's about 2 years ago. 

Q: What kinds of tics do you have? 
A: When I was younger I had a lot of different tics like eye rolling but they weren't very noticeable. When I was 13 I started to shout and I didn't know what was happening to me. My parents were really sad and angry. Now, I'm taking a medicine that really works for me so my tics are a lot better. 

Q:What is life like for you living with Tourette Syndrome? 
A: Life with Tourette's is really hard. When I first started to have tics it is very difficult, but it got easier as time went on. 

Q: What's the hardest part about having Tourette's? 
A: I think the hardest part about having Tourette's is meeting new people. They don't know why I'm shouting and sometimes they are scared. It's hard going to the movies and my main problem is going to church! I can't stop ticcing in church. 

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: Don't worry, just be happy! You must live the life! Dont worry about people who don't understand. Think positively! 

Q:What do you think other people should know about Tourette Syndrome?
A: Other people should know that our tics aren't our fault and they should accept us. 

Q:What are your strengths and what do you like to do? 
A: I really love reading books! My favorite genre is fantasy. I am interested in learning more of the English language and next year I'm going to be in a special English competition. 

Q: What are your goals in life?
A: When I grow up I want to be a doctor and help polish people who have Tourette Syndrome. I will be a doctor with my own experience with having Tourette's. I would like to say you more but I can't find enough words in English.

My Story! My life with Tourette Syndrome.

My Story: My life with Tourette Syndrome

(A picture of me ticcing at 3 years old)

Q:What is your name and how old are you?
A: My name is Ruthie, I'm 20 years old, and I'm a Junior in college.

Q: How long have you had Tourette Syndrome?
A: I've had Tourette Syndrome since I was 3 years old. I was misdiagnosed for a long time though and for that reason I wasn't officially diagnosed by a neurologist until I was 17.

Q: What kinds of tics do you have?
A: I've had to many types of tics over the years, but right now some of my tics are facial grimacing, blinking, rolling my eyes, head jerking, punching my arms outward, hitting objects around me with my hand, sniffing, coughing, and high pitched noises.

Q: Do you have any associated conditions?
A: I have OCD, anxiety, and sensory processing issues.

Q:What is life like for you living with Tourette Syndrome?
A: Living with Tourette's has it's challenges. I wake up every morning knowing that I will move through may day jerking my head, rolling my eyes, hitting , and making noises among many other things, but this is my normal. When it relly comes down to it , Tourette's has given me so much more than it has taken from me. It has given me an amazing community of people who I will never take for granted. I would have never met my amazing camp twitch and shout family, the people who I do research with, or my Tourette's Syndrome Association friends if I didn't have TS. Tourette's has also given me confidence. I don't mind explaining or answering questions and I love educating people about TS. In fact i'm going to be educating 200-400 medical school students about Tourette's in September! Having Tourette's is a unique experience and the opportunities that have come from having TS have enriched my life more than I would have ever known. Like one of the nurses from camp twitch and shout said "people with Tourettes are not the ones that are disabled in our society, it is the “normal” people that are handicapped in the depth and beauty of life."

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: As a person with Tourette's, you can do anything that anyone else can do. Ever since I was little, I was told "you can do anything you set your mind to". I took that message to heart. Even though you have tics, you should never use the word "can't". You should never let your Tourette's be a reason you can't do something. You might have to do things a little differently sometimes, but you can still succeed and do everything you want to.

Q:What do you think other people should know about Tourette Syndrome?
A: You should treat people with Tourette's just like you would treat anyone else. Most of the time, I feel pretty darn normal, so that's how I want you to treat me. I go to classes, hang out with my friends, go out to eat, and live in the dorms just like every other college student. I might twitch a bit more along the way, but i'm just as smart, just as capable, and just as motivated as any other person. I won't let me tics get in my way or stop me from doing the things I love. A lot of the time, I forget I have Tourette's and I just go about my day like anyone else. When people treat me any differently it surprises me. I don't feel impaired in any way. I might be different, but everyone is different in one way or another.. being different is normal.

Q:What are your strengths and what do you like to do?
A: I am fascinated with neuroscience and am passionate about brain research. My college major is Philosophy-Neuroscience-Psychology (PNP) with a focus in Cognitive Neuroscience and I'm a research assistant in two labs at the medical school associated with my university. One of the labs I do research with is a lab that focuses on Tourette Syndrome and last year I conducted my first independent research study. My study focused on the sensory processing issues that many people with Tourette Syndrome have and I now have two research publications on this study. This year I'm going to continue to work towards more findings and publications.

Q:What are your goals in life?

A: Next year I'm going to be applying to PhD programs. I would love to get my PhD in either Clinical Psychology or Cognitive Neuroscience. My goal is to one day have my own lab that focuses on Tourette Syndrome research and to make a difference in the lives of others :) 

Success Story #1!! Katy's Life with Tourette's Syndrome

Success Story: Katy's Life with Tourette Syndrome

Q: What is your name and how old are you?
A: My name is Katy, I'm 17 years old (almost 18!) and I live in Wales in the UK.

Q: How long have you had Tourette Syndrome?
A:I was diagnosed with Tourettes 9 months ago after I suddenly started developing a throat clearing tic.

Q: What kinds of tics do you have?
A: My tics quickly developed to head jerking, clapping, tapping, coprolalia, copropraxia, echolalia, punching my chest, clicking my knuckles and facial grimaces. But I like to think of my signature tic as my squeak (my friends often call me guinea pig now because I squeak so much!)

Q: Do you have any associated conditions?
A: I also have anxiety, panic disorder, OCD and some issues with sensory processing.

Q: What is life like for you living with Tourette Syndrome?
A: Life has been pretty up and down with tourettes especially because I developed it so suddenly and at such a strange time in my life! I'd already become used to life as a teen without tics but then suddenly developing tourettes really turned my life upside down. People around me, like my friends and teachers had to be informed about everything and there have been times that I've felt like a burden because everyone has had to adjust to my tics.
I felt like I wanted to record with journey and show people what it's like to live with tourettes, so that's when I started my YouTube channel 'LetsTalkTics'. My channel has been such a help to me because I can talk about tourettes openly and it has helped me to come to terms with the fact that I might be living with tourettes for the rest of my life.

Q: What advice can you give others who are newly diagnosed with Tourette Syndrome?
A: The largest piece of advice that I can give to those who are newly diagnosed with tourettes is that being open about your tourettes is much easier than being closed about it and you'll end up gaining the best support if you talk to people about what you are going through.

Q: What is the hardest thing about living with Tourette Syndrome?
A: The hardest thing about living with tourettes for me is the swearing tics. I hate saying these horrible words in front of my friends and family and coming to terms with this has been really difficult and I'm still not very comfortable releasing my swearing tics in public.

Q: What do you think other people should know about Tourette Syndrome?
A: I think people need to know that tourettes is not just about tics. It runs so much deeper than that because tourettes can cause physical and emotional pain, tiredness and almost always comes with co-morbid conditions so it's not always just about the funny movements and sounds.

Q: What are your strengths and what do you like to do?
A: Despite having vocal tics, I absolutely love to compete in public speaking competitions. I always feel so confident and standing on the stage reminds me of my life before tourettes. But it also shows me that tourettes has not limited me in any way.

Q: .What are your goals in life?
A: I'm about to start my last year in school before moving off to university, hopefully to study psychology. I'd love to work in a rehabilitation centre or an inpatient care facility.