Learn about my Ugandan adventure!

Ever since I can remember, I’ve wanted to go to Africa to work with children, to volunteer. When I started attending the Primary Teachers College in the Netherlands four years ago, that dream changed into teaching children in Africa. But there was always this little voice in my head that said, “with my Tourette’s, I will never be able to go to Africa for a long time.” A few weeks, maybe, but not for months.

I was always so envious of people who said they were going away for a few months, or even a year, to experience a new country, a new culture and to volunteer for a good cause. I never thought that could be me. It would be too exhausting, there were too many ‘new things’. I would be out of my comfort zone, without my house, parents, sister and friends. I wouldn’t have the basic things I thought I needed.

Last year I got the opportunity to go to Lira, Northern Uganda, for two weeks, with a Dutch organization called Edukans. It was a trip in which student teachers from the Netherlands and Uganda would work together. That I could do, I thought to myself, it was only two weeks. But being there, it hit me: there is no reason why I can’t do this for months! There is no reason why I couldn’t be happy volunteering and working with children, here, in Northern Uganda. I even realised that there was no reason why I couldn’t live here forever.

So I made a decision. I took a leap of faith and went back to Uganda. This time without a group. It was just me.

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If you can dream it, you can do it!

Hi everyone! Here is an article on an interview I did earlier this month. Hope you enjoy it and get the message! 🙂

Once you meet Laura, you will always remember her. She is an amazing teacher not only because she loves her work but also for the path she travelled to become one with Tourette’s Syndrome (TS). She refuses to be limited by her disability and believes it has been the driving force behind her desire to achieve things.

For Laura there was only one career objective – to help children with their disabilities. Studying psychology was her original plan, but the academic schedule was not compatible with her TS, so she had to give up this choice. Her determination made her continue and in April 2014 graduated as an elementary school teacher. She says: “I have my goal and might have to go around to reach it…but I will get there!”.

Do her students treat her differently? Actually no. Her students do not seem to care or notice her symptoms. She explains that because of her TSLaura  can relate to pupils with learning disabilities and also identify herself with them “I have something too, it’s called Tourette’s” she tells them. As a teacher she is very creative and gives her pupils this motto “If you can dream it, you can do it”. Laura passionately believes that teachers should focus on student’s abilities and not their disabilities, give encouragement, look at the positive side of things and inspire pupils to be positive.

Laura’s commitment to helping children extends beyond her own country – Laura is now a teacher supporting education in Lira, Uganda. Through Edukans, an organisation that helps disadvantaged children in developing countries attend school, Laura is helping Ugandan teachers to improve their lesson plans, create class materials and support pupils.

Source: http://www.tedxamsterdamed.nl/interview-laura-beljaars-teacher/

A look back at the success of TSelfie Day!

A few weeks ago, on June 7, it was European Tourette Syndrome Awareness Day (or ETSA)! This day we use to attract as much awareness as possible for Tourette, especially from te media. I know in America you have the entire month, but we are very happy to have this day — it’s only the second time, and we wanted to make it as big as possible!

This year, we decited to work together and try to come up with a great idea to attract awareness. First we were with three organizations in the Netherlands and Belgium, but later we pitched it in the European meeting in Paris and everybody loved our idea and so the TSelfie was born and made into a huge success!

In case you’ve missed it: we invented te ‘TSelfie’, the Tourette Selfie (conviniently spelled with TS at the start. 😉 This is a selfie taken with a wink, one of the most common tics! This way, we wanted to attract attention and also focus on the fact that Tourette is more than just swearing, there are a lot of other tics too!

We’ve worked very hard in attracting publicity and local celebraties, to attract even more attention. We also made a website, www.tselfie.eu, were we posted all the TSelfies and gave the public some explanation about Tourette, as well as links to all the different associations in Europe.

On the day itself, it turned out to be a HUGE succes with TSelfies from lots of celebraties and a LOT of people from a lot of different countries! I’ve seen TSelfies from America and India and almost every country in between! We even got a TSelfie from the Hungarian waterpolo team (in bathingsuite, of course…!!!), who were the Olympic champions from 2000, 2004 and 2008!

In the end, we got about 824 TSelfies from all around the world, which I made into a collage! I know there are more of them, but there were so many, there is no way to know for sure whether we got them all! I am so proud of what we’ve accomplished and I can’t wait for next year!

All these people supporting our cause: Tourette Awareness! It’s very humbling to see how this many people who I don’t even know, support us by posting a TSelfie, which we invented in a impulsive and creative group right here in the Netherlands and Belgium.

Besides the TSelfie, I was also on national TV on June 7! They taped here at my house and the shops nearby and at 11 p.m. I was on TV! I was very nervous, because I thought (for no reason, of course) that they weren’t gonna air it, but they did and I got a lot of great messages from people about it!

You can see it here (it’s Dutch): http://www.hartvannederland.nl/top-nieuws/2014/leven-met-tourette/

And this past Monday (June 23) I was  in a magazine about being an educator with a disability and today I will finally officially graduate and get my diploma! More on all of that soon!

Are you ready for #TSelfie on June 7?!

It’s been awhile since you’ve heard from me. That’s because, since November, I’ve been working nonstop to graduate collage! Last month, on April 24, I graduated and I can finally really call myself a teacher!

It was hard work. I had to go to my internship three days a week and work on my final paper as well. And that for seven weeks straight, after the months of hard work I had done already. But in the end it was all worth it, because I can now finally say that I’ve graduated from college! And I actually graduated early, as the graduation ceremony is on June 26, so I had until then to finish.

Right now I’m trying to rest as much as possible because I’m very tired. And I finally get to work on the Tourette-related things I’ve been wanting to work on for months, but I didn’t have the time or energy to do it up until now. I have quite a lot of meetings scheduled for TV shows and other media-related things, which is very exciting. I’m not going to be in all of them, but in my role as volunteer for the Dutch TSA I give them info and try to make sure it will be a nice and respectful show and it won’t be all about swearing.

Right now, I’m busy making plans for the European Tourette Day, which is June 7. Together with other organizations from the Netherlands and Belgium, we’ve thought of an amazing idea to spread TS awareness and I hope you can all help by joining in (all European organizations will!)!

We’ve invented the TSelfie: Tourette selfie. This is a selfie while winking (with one eye) and you have to post it on your social media accounts (Twitter/Facebook/Instagram) on June 7! Put #TSelfie and the website www.tselfie.eu in the same post and we hope we can get the attention of the media and of course, spread as much awareness as possible!

On the website, you can find info on the TSelfie and on Tourette, so it’s very important to add the website to your post. A lot of celebrities join us and post their TSelfie on June 7 and we hope to get a lot of Tourette celebrities to join in as well.

Call all your friends and tell them to post a TSelfie on June 7 and support Tourette awareness! You can follow us at Twitter (@TSelfie), Facebook (facebook.com/TSelfie) and Instagram (@TSelfie2014) for more updates on the TSelfie!

“With Tourette, your dreams can come true as well”

Last week, I was in the biggest newspaper of the Netherlands — again! I finally got the time to translate the article, so here it is! The interview was done because a journalist saw the videos of my speeches in Athens, so I’m very proud of that. 🙂

Happy Holidays!









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I’M ALIVE! – ‘With Tourette your dreams can come true as well’

Laura Beljaars has Tourette Syndrome. Her goal is to show other young people that with this disorder, your dreams can come true as well.

By Marion van Es

Many people think that all Tourette patients constantly swear, while in fact it’s just a small part of Tourette patients who have this tic. There are tics that are way more common, but those are apparently not interesting or ‘funny’ enough. Which is too bad, because Tourette is different for every person.

For me it’s hard to filter all the things that go on around me, I have concentration problems and most of the time I’m very tired. When I was twelve, I had about 300 tics every 15 minutes, mostly twisting my eyes and tensing my muscles. Luckily I have never been bullied, probably because I’ve always been very open about my Tourette. Everybody can ask me anything they want.

I’ve always thought that I had to accept that I just couldn’t do everything. I wanted to help children so I started to study psychology, but I had to stop, because it was too much for me at that time. Later I realized that there are a lot of different ways to achieve a goal. I can do anything I want, I just have to take a detour sometimes.

At the moment I’m almost graduating college, to become an elementary school teacher. I would love to help children who have a difficult time at school, for instance because they have Tourette, ADHD or autism. I want to show them, that even with a disorder like this, your dreams can come true.

In April of this year, I had the opportunity to speak at an international conference about Tourette Syndrome. You can see the videos of those speeches at www.tourettelaura.nl. It was very special to show the human side of Tourette like this. Of course it was a bit scary to speak in front of this many important researchers in English, but the message I had, was more important than my nerves.

A lot of young patients hate their Tourette. That’s too bad, because that means you hate something within yourself. There is way more possible for you, then you might think.

I’ve taught many different grades at elementary school, but never did someone make a problem of me having Tourette. If you don’t make a problem of it yourself, most others won’t do that as well.

A lot of people think live is over when you have Tourette, even my mother thought that, back when I was just diagnosed. She says I taught her that this is not true.

School, social media and life … take up a lot of time!

I’ve been meaning to write a blog for a long time now, but I’ve been SOOOO busy these past few, well, months! I’m graduating this coming spring, and it takes up more time than I thought. Which is pretty normal, I guess, but I’ve been ignoring that the first few months of the school year.

The thing is, I have to make a thesis, which consists of research and than a practical part, in which I have to test my research results. But to do research, you have to read a LOT. And that’s my problem, I have very little concentration and because of that, I don’t like to read. Well, to be honest, I’m afraid of books.

All the time when I’m reading, I really struggle to have enough concentration to even understand what the book says and that constantly reminds me of the fact that I have Tourette and that, because of that, there’s something I cannot do. I don’t like it when I’m reminded of that, and I’m actually really afraid of that feeling, so books were just not my thing..

For the first few months I just ignored the fact that I had to read, but that also meant that I fell a few months behind. So I finally decided to go back to my psychologist and have a session of EMDR, which is a great therapy that helps me with just about anything.

After one session it was way better, and now I’m almost back where I have to be to graduate and turn in my thesis on time. I’m still struggling to start working on it every time I need to, but I noticed I wasn’t the only student — especially not the only student with Tourette — who has that problem.

I don’t really know how to change it, except for working late at night. But that only makes it worse in the morning, and I still have two days of interning every week, so I have to get up early those days. I do keep my free Wednesdays and weekends, to rest, otherwise I go crazy. So I only have two days a week left to work on my thesis and other school stuff, but that’s OK. In the end, I really think it’s gonna be OK and I will be able to turn in my thesis on time and, if so, I might even graduate early!

To end on a positive note: The Dutch TSA is now the third most influential patient organization on social media in THE ENTIRE COUNTRY (The Netherlands)! And that’s for a big part because of me! I did a social media course a few months back and now everything is organized, and I really know what I’m doing, so our Kloutscore went up big time!

We now have way more influence and also much more interaction, followers and likes, and I’m really proud of that! Of course, it takes up a bit (more) of my time, but I really love it! It’s really a lot of fun doing it and seeing my follower count go up every day 🙂 So … NJCTS, need a pro to run your social media? 😉

Life isn’t all good times and roses!

Lately I’ve noticed that some of you think my life is all positive and only great things happen to me. I can’t blame you for that because a lot of great things have happened to me lately and I never write about the not-so-good-times. I don’t like to write about that, but that doesn’t mean it’s not there. So today: the not-so-good-times!

Three weeks ago, my school year started and that always means that I have more tics. This year came with the lovely surprise of a new tic, which centered right on the edge of my skull and it hurt a lot. A week later, the tic was still there, but I guess I combined it with another tic and I cracked my ribs out of place. I think basically all of them, or at least a lot. That happens to me every few months, as my spine isn’t completely straight and my ribs have too much place to move.

But now, I got dizzy with every move I made and every muscle in my body started to hurt (the tension in my muscles was too high, so even my legs hurt). But the tic was gone, so that was good. I don’t think I could even do the tic with my ribs at the wrong place.

A few days later, I got my ribs cracked back in place and I figured, it would be OK from then on. But no. The muscles in my neck had space to move again and I got even more dizzy now. And the headache got worse. Now my rib wasn’t supporting my head anymore, the muscles in my neck had to do that again, like they are suppose to. But the tic, which I’d only had for one week and I hadn’t done for five days, hurt these muscles so bad that my neck wasn’t really capable to hold my head without making me dizzy and giving me headaches. And it turns out, these muscles are attached to the eyes, what explained the constant dizziness and me not able to see straight.

My physical therapist tried to relax my body (because everything hurt again because of the high muscle tension) and the muscles in my neck, which worked out a bit. And she taped my neck, so the muscles don’t have to carry my head on their own (and it also works against tics).

So now I have bright blue tape on both sides of my neck (which clashes with just about every outfit I want to wear 😉 and at night still a lot of dizziness and headaches. I basically have to lay down as much as possible and if I don’t, I have headaches and I’m dizzy. So I’m taking it slow these days and hopefully the muscles in my neck get stronger soon because I’m really sick of it after three weeks!

But, you know, it’s part of life with Tourette. Life isn’t perfect, I don’t even want it to be. Just try to focus on the good things, like I do (I haven’t had neck tics in two weeks!). And even if you think my life is perfect, when you read my blogs, remember; no life is perfect, I just decided to live my life the way I want to and so should you! 🙂

Dreams can come true

If you would have asked me one year ago, exactly, what dreams I had, I would have told you that I had two major dreams. I never told anyone about the third one, but there were actually three:

  • Going to the Olympics
  • Teaching in Africa
  • Speaking at an international conference about my Tourette (that’s the one I never told anyone about).

And now I can say that I did it. I did all of them — starting exactly one year ago the other day.

Last summer, on August 7, I went to the Olympics and it was better than I could’ve ever imagined. Me and my friend, two HUGE field hockey fans, were able to get tickets for the women’s field hockey finale, just a couple hours before the event, and the Dutch team won. I didn’t even dream about that, it was too far out of reach, I was sure that it would never happen. But it did.

Then this April, as you know, I went to Athens to speak at the ESSTS Training School and they ended up being so impressed that I spoke again, in a room full of BIG doctors and therapists specializing in Tourette. That was literally my wildest dream, and I didn’t believe that it could ever happen. But it did.

And now, this summer, I went to Uganda to teach. I went for two weeks because I figured, with my Tourette, I would never be able to go for a longer time. I wanted to, but because of my Tourette, I thought it just wouldn’t be an option. So I went for two weeks. I didn’t think I could achieve much and I figured it would be a once in a lifetime experience. But I did and it wasn’t. I’ll be back there, and soon. That’s my new dream.

So what I want to say with this blog is that it is possible. If you have a dream, go for it! Yes, I know, you have Tourette and maybe more, but that doesn’t mean that your dreams can’t come true. You have to work for it, it won’t come to you if you just wait.

I had to save up and fight for those Olympic tickets for almost two years. I didn’t get invited to speak in Athens just because my mom suggested it to my therapist; no, I got invited because my therapist knows me and I had proven to her many times that I was capable of speaking at this conference. And I’ve been working for my journey to Uganda for a year now, not just saving up to pay for my trip, but also raising more than $2,400 for the education projects we’ve seen and worked with.

If you have a dream (yes, that one, you know what I mean!): Go for it! I promise you, it will be worth it. It is said best in these lyrics, written by some of my fellow travelers to Uganda:

If you never try you’ll never know

There’s so many things that we can show

See what we can achieve

If we can trust and we believe

Take a leap across the Nile

Even if it takes a while

Life starts

At the end of your comfort zone

I learned a lot while in Uganda

One month ago, as you know, I went to Uganda to teach. I have been back for a couple of weeks now, but I hadn’t been in the mood to write about Tourette, because all the things I had seen and done first had to sink in a little.

First of all, it was amazing! It was very tough at times, but it was so, so good as well. I was so happy there, you can’t even imagine. Not that I’m not happy here, but I literally screamed (more than once) that I didn’t want to leave (luckily, I wasn’t the only one 😉 ). The group was amazing, and I really think we’ve achieved a lot.

Being there, I came across some things that related to my Tourette as well. I always joke about that I should’ve been born 50 years ago, so I wouldn’t have all those things like internet, TV and cell phones to distract me and make me tired. And in Uganda, it is like that.

I mean, all that stuff is there as well, but most of the time, you can’t use it because of the lack of reception! And it was SOOOO relaxed! It was quiet and peaceful, and I didn’t get tired that easily, and I didn’t get cranky that easily — it was so nice!!

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Doing life on my terms: Heading to Africa to teach!

This is the blog I was actually going to write when I started about June 7! You all know that I have done some very exciting stuff lately, with my trip to Athens and my speeches there, but you should know that there is another thing in my life that I am as passionate about as I am about Tourette: education.

Hopefully, in May 2014 I will graduate and be an elementary school teacher (kindergarten and 1st-6th grade). But I’ve always wanted to go to Africa and help with the education there, as I believe education is where it all starts and how problems can be solved. It’s also what we do with TS awareness: educating the public about what TS really is.

So I really want to go to Africa to teach and to motivate children (and their parents) to go to school and to get a good job. And that’s exactly what I’m going to do! This Sunday, July 7, I’ll leave for Uganda for two weeks to teach and to work with local students who want to become teachers, just like me.

A couple of months ago someone told me that she was really impressed that I was going on this trip while having Tourette. I thought about that for I while and then I figured: Why wouldn’t I do it? It’s something I really want and, yes, it might be a bit harder for me, but what in life isn’t?

It’s going to be exhausting for everyone, and it’s going to be maybe three times as exhausting for me (with all the new impressions and such), but I’ll just sleep three times as long afterward! I’ve told everyone in my group about TS and what it means to me and that I need rest and some alone time and what they can do for me, so there’s really no reason not to go! I’m going to Africa and I’m going to teach!

I wanted to share this with you, because I really think that you can do everything you want, while having Tourette, you just have to find your own way to do it. If I hadn’t had TS, maybe I would’ve gone longer, but the only thing that matters is that I’m going, and I’m going on my own terms and in my own way!