Daily Blog

What an exciting month! I was approached to do an interview with ITV Westcountry. With footage of myself and Seren Jaye, a short film was put together about Tourette’s Syndrome and how the media have misunderstood and misrepresented it. We both talked about the stigmas attached and the difficulties we encounter in everyday life. Watch the video below to hear what we had to say:

This month has been busy for the Tourette’s Syndrome community as it was Tourette’s Awareness Month from the 15th of May to the 15th of June. Seeing everybody has made an effort to raise as much awareness as possible is fantastic. Tourette’s Action ran a fundraising project called ‘Move for Tourettes’, which many people from across the country participated in. 

On June 7th, Tourette’s Syndrome Awareness Day, there was a ‘Turn it, Green, for Tourettes’ night. This year many landmarks were lit up green to help spread awareness. I wrote to the iconic St Michael’s Mount in Cornwall and was excited to hear that they would participate in the event. It looked stunning like a floating spaceship lit up green in the sea. This was just one of many landmarks lit up green across the UK to support Tourette’s Syndrome Awareness Day that night. To see more photos of the other landmarks, head to the Tourette’s Action Instagram page.

I want to say thank you to everyone that took part in some way this month in increasing awareness and banishing the stigmas associated with Tourette’s Syndrome. Even if it is just by watching the interview of Seren and me to continue educating yourself further about Tourette’s Syndrome, the Tourette’s community, and I appreciate it so much.

Wilamena Xx

In the summer of 2021 I was lucky enough to discover an online conference held by NJCTS – New Jersey Centre for Tourette’s Syndrome, aimed at building confidence in young people suffering with Tourettes syndrome and enabling them to advocate for themselves and others, out in the community. 

Because it was an online course, this meant that I could join in even though I was in the UK and there was a 5-hour time difference. Initially, I imagined myself joining in for a little while and then sneaking off to bed when I had listened and heard enough… this however didn’t happen and I found myself still attending at 2 am in the morning 2 days in a row. 

The course was incredibly interesting and lots of fun; the people involved were very inclusive and really happy that I had joined them. It turned out that as an organisation, they already followed my blog and were already very impressed with my efforts at spreading the word and talking to people about my Tourettes. I felt that I had connected with some very interesting and like-minded people who totally understood and related to how my life was.

I made a video of my journey and the academy and interviewed the coaches and participants who all have Tourette’s Syndrome which you can watch below:

NJCTS – my journey to New York  

In 2022 it was announced that the NJCTS Academy would be running live again. This meant that young people suffering from Tourette’s Syndrome (TS) would be able to apply to take part in a 4-day educational programme to be held at Rutgers University in New Jersey. What a fantastic opportunity for everyone! A bit sad for me that I wouldn’t get to enjoy spending time with everyone on zoom as I had done the previous year. 

I didn’t dwell on it, although every now and again I would think how great it would be to join in, but how impossible it would be because of the distance and cost. As time went by I started thinking of ways I could finance a trip… it would be invaluable… I could bring back some leadership ideas to the U.K… I would get to meet some young people like myself who want to advocate and talk to people about Tourette’s…

Then I remembered that a while ago when I was involved in my project with the BBC, a small Cornish charity stand-for.co.uk contacted me to say that if there was ever anything I needed to help with my quest to teach people about Tourette’s syndrome and it’s complexities, I should reach out and ask them. I felt that this project was something worth sponsoring and so I approached them to apply. I was very lucky and extremely grateful to be awarded the money to fly over to America and cover the costs. My dream had come true and I was going to the NJCTS Leadership Academy 2022. 

On August 2nd we set off to London where we stayed overnight in a hotel and on the morning of the 3rd we boarded our flight to Newark Airport, New Jersey. The flight was to be 7hrs long and we had planned it so that we arrived in the evening American time and could go straight to bed ready to start a busy day at the academy the following morning. 

Some Hints and Tips for travelling

• WEAR A SUNFLOWER 🌻 LANYARD

Travelling with a sunflower lanyard proved invaluable, especially at Heathrow airport, where I was treated kindly and with respect, no questions asked. It enabled me to miss the long queues which meant my anxiety was lessened and my tics reduced. 

• PRE-ARRANGE PRIORITY BOARDING

The next important thing I would advise a traveller with a hidden disability is to prearrange priority boarding. At first, I felt I didn’t want to cause a fuss and would be happy to wait my turn. As the flight time approached I realised that it would be sensible to board the plane early. It was fantastic – it meant that I had time to accustom myself to my surroundings. 

• PACK YOUR TRAVELLING ESSENTIALS 

I had plenty of time to gather around me all the things I would need to make the flight work for me – headphones, laptop, tangle toys, book, water… There was no stress because there was still no one else around and no hurry. I felt so calm and relaxed. I had made a list before I left home to make sure I hadn’t left anything behind! (Another good tip!)

After a calm and very smooth flight (and many films!) we arrived in New York! The excitement had begun!

Rutgers University, New Brunswick

We took a 40-minute train ride to New Brunswick, in the state of New Jersey and stayed in an Inn on the Rutgers University campus.

It turns out that the university campus is enormous! We had to catch a 20-minute bus ride to the side of the campus where my residential course was to be held. We learnt that there are 5 campuses in New Brunswick alone and more than 50,000 students! In August there are no students so we had the place more or less to ourselves!

Arrival at the Academy

We were met by a group of very welcoming people representing NJCTS, who were all very excited that we had been able to attend, all the way from the UK. I was immediately made to feel welcome.

The format of the residential was for 20 young teenagers around my age, to be inspired by older college-age students with TS who were called Coaches. The whole course was for us to be taught how to gain the courage and skills to advocate for our disability out in the wide world. For some that may be just gaining the courage to talk to their friends about it; for others, like myself, who are already taking steps forward to educate people, it was all about taking this to the next level and teaching us how to go about talking to institutions and explaining what Tourettes is and what they can do to help in a difficult situation. Some of the coaches regularly talk, not only to schools and colleges but to the police, ambulance services, hospitals etc.

We were soon swept away and taken to meet our ‘Dormies’ and ‘suitemates’. Parents were asked to leave at this point and it was time to throw myself in at the deep end! Everybody was so kind, welcoming and relaxed – I was surrounded by people who understood and were happy to enjoy the moment without suppressing their tics. Even the nurse had Tourettes. It was fantastic!

Day 1

The first thing we did was a zoom meeting with Tim Howard who puts his name to the Academy. He is a soccer player who played goalkeeper for Manchester United and Everton in the UK. In 2001 he was named MLS Humanitarian of the year for his work with children with TS and was added to the board of governors of NJCTS. In 2014, the U.S. Tourette Syndrome Association described him as the “most notable individual with Tourette syndrome around the world” and was deemed “Champion of Hope” for the “tremendous courage he displayed in sharing his story on an international platform, educating the public on a disorder that is so seldom talked about, and encouraging young people living with TS to speak out about their experiences”.

We were able to talk to him and ask him questions. I asked him whether he was ever worried about ticcing while presenting the sports TV show he now works on. He replied that the people who employed him knew what they were taking on and that he wasn’t concerned about it at all. 

During a similar Q and A the year before on the online course, I asked him how things were regarding the acceptance of TS in the UK and the US. He replied that we were many years behind over here in the UK. This is one of the reasons I felt I wanted to attend the course and try to bring some of the ideas back here to help children and young adults in the UK advocate for themselves and to create a similar rolling system where the older students coached younger ones and so forth.

A very important part of the Academy is spending recreational time with other young people with TS. We chatted, played games and generally had a lot of fun. If at any point we needed some downtime we were always welcome to rest quietly in our rooms without any pressure.

As time went on and we all relaxed in each other’s company the tics got more frequent and probably louder! A cacophony of words and sounds would echo around the room and a group of very happy young people enjoyed a fabulous time, not even noticing what was going on. It was so refreshing. It’s very hard to explain to people without TS how difficult it is to go about everyday life feeling that you have to choose, as best you can, when would be the most appropriate time to tic and how best to disguise it. At times it can be torture!

Once each day we would be split into small groups with five participants and two coaches. This meant that we had plenty of time to get to know our coaches and were able to talk to them about our concerns for the future… driving, college, jobs etc. I have never spent time with a group of people with TS in this situation.

Day 2

We were then lucky enough to meet Doctors and specialists in our small groups and learn all about their skills and specialisms within the TS community. It was so interesting and refreshing to be able to talk to them and ask questions. At no point where we made to feel intimidated or uncomfortable. We all learnt so much about the condition and some of the things that are available to try and relieve the tics.

One of the activities that day was shoe painting. It was really interesting to see how everybody came up with different ideas and what a great selection of colourful shoes was created!

We also had a music workshop with coach Sarah who is a songwriter and plays the harp. Like myself, she finds music a complete relief from her tics.

Day 3

On day 3 we were given the fantastic opportunity to visit a laboratory on campus where scientists are undergoing a very important study regards the genetics of TS. We were given a tour of the laboratory and were given a talk about what was involved and what the scientists were looking for.

I found this part of the day particularly difficult. In the UK I have an exemption for wearing a mask because it makes me tic really badly and is unbearable. In the US there is no such exemption, and unless you are physically unable to wear a mask, then it is obligatory. I had to do a lot of suppressing to get through this part of the day which was particularly long and extremely hot. Sadly, that evening I had a tic attack which set off a few other incidents with other people. I learnt from this that it really isn’t worth putting myself in this sort of situation, because of the result. It reinforced in me that avoiding school assemblies church services or quiet events where I feel it would be inappropriate to tic is the right thing to do to avoid difficulties later. It made me realise how important it is to speak up and excuse oneself or allow special provisions like boarding a plane early, without feeling guilty or embarrassed. 

In the evening we had a really fun time doing karaoke, eating ice cream and generally having lots of fun.

Day 4

Day 4 was our final day. We had a final brunch together and there was an award ceremony where we received certificates and congratulations. Many photos were taken and sadly it was time to say goodbye.

I really can’t thank the people who enabled me to attend this residential enough. It was the trip of a lifetime. I met some fantastic people, made friends for life, learnt so much and had the best time! It was both educational and fun and I loved every minute of it!

Trip to New York City

And of course, we couldn’t travel all the way from Cornwall to New York without visiting the City. It was AMAZING. There was so much to see and do – boat rides, theatre, shopping, to name just a few; and eating all things American! Donuts, pizza, bagels, waffles… it’s all there in New York City and I feel so grateful to have had this fantastic opportunity. Now I just hope that I can put together all the things I have learned and bring some of these ideas back to the UK. Watch this space!

Wilamena Xx

Hello everyone,

I hope that everyone is ok and having a good summer.

Sadly today I am going to address something that has caused a huge negative impact on the Tourette’s community recently. On July 19 2022 Channel 4 broadcasted a documentary called “Britain’s Tourette’s Mystery…” presented by Scarlett Moffatt that has caused outrage within the Tourette’s community due to the disgraceful, inaccurate and untruthful ‘facts’ that were shared in the program. It is appalling how much damage can be caused when an already misunderstood neurological condition is once again falsely represented in the media.

Not only does this undo the hard work that the charity Tourette’s Action is constantly doing to advocate for the community and educate others, but it also increases the stigma and misconceptions for children and adults with Tourettes to have to deal with in their everyday lives.

In my opinion, when someone is making a documentary about a disability it is so important for them to get their basic facts correct otherwise it will obviously cause a detrimental aftermath for people with that disability and at the end of the day it isn’t Channel 4 that is going to have to deal with the mess that they have made, it is those who have Tourettes or tic disorders who will now have to work twice as hard to be accepted and understood by those around them. 

For those of you that don’t know, Tourette’s Syndrome is a Neurological condition that you are born with that causes a person to make involuntary movements and sounds called tics.

On the contrary to what the documentary implied, you can not catch Tourette’s Syndrome like a cold! People with TS (Tourette’s syndrome) are not in any way contagious because as I said previously it is a genetic neurological condition.

The presenter Scarlett Moffatt even went as far as saying that she was “worried about catching it” which obviously shows how misinformed and uneducated she was about TS. This in itself is unacceptable as spreading inaccurate information on a large-scale media broadcast is so harmful to those that struggle on a daily basis to not only deal with their own symptoms but to also be constantly educating and correcting those who have been misled by stereotypes of the condition and from dramatised and false media reports or documentaries such as this one.

Parents have raised concerns following the broadcast as their children with TS are now worried about their teachers or classmates seeing the documentary as they may now think that they could catch it like a cold and will avoid, bully or discriminate against them.

An important piece of information that Scarlett Moffatt failed to share in the documentary is that having tics doesn’t necessarily mean that you have Tourette’s Syndrome (TS) as there are many other possible causes. For example, tics can be the result of anxiety, tic disorders or functional tics (FND). All of which are very different. They may all result in tics or tic-like movements but they often present in different ways and aren’t all Tourette’s Syndrome.

This is crucial information that definitely should have been included in the documentary as many of the people who were involved or interviewed in fact did not have TS but were struggling with one of these other conditions or disorders. To me, this definitely raises the question of why they titled it “Britain’s Tourette’s mystery…” when in fact the majority of the documentary was investigating tics or tic disorders and what has caused the rise in them instead of the focus being on Tourettes?

Another issue with Scarlett Moffatt failing to mention the difference between Tourette’s Syndrome and tic disorders is that tics disorders can sometimes only last for a short amount of time whereas TS is a life-long condition. When a person with TS becomes an adult, sometimes their symptoms can improve or sometimes they worsen, but you definitely can not suddenly “recover” from Tourettes overnight.

I know that those in the TS community now have the extra anxiety of thinking that people around them may start thinking that their tics will suddenly disappear or in fact start accusing them of just faking them and ask if they can just stop ticcing one day which is definitely not the case! 

Within the documentary, Scarlett Moffatt also met with a few influencers who have Tourette’s or tics as after reading an article online she started to believe that you could gain TS from watching TikTok’s of people with tics. This however is also incorrect as if you already have TS then it is possible that seeing someone else ticcing can make you tic more temporarily, but someone who doesn’t already have TS can’t catch it or develop it from watching someone tic on TikTok. Some of the influencers involved, like Glen Cooney (this.tourettes.guy) have already spoken out and confirmed that due to the editing process of the documentary, the majority of their beneficial and important conversations about helping young people with tics to cope were completely cut from the final edit which was very disappointing as their main goal was to educate and advocate for Tourettes as they do online. 

Tourettes is an officially recognised disability and it is illegal in the UK to discriminate against a person with Tourette’s Syndrome in any setting. It is bizarre that the executive producer, Elspeth O’Hare, who has 15 years experience of producing a wide range of documentaries and is the creative director of the Tinopolis Factual Group that claims to produce “award-winning factual” television, could have produced such a factually incorrect and damaging program as this.

Even a very small amount of research online would have shown Elspeth O’hare that a large portion of this documentary is filled with misinformation and assumptions and presents ‘facts’ with no scientific evidence to support them. I have to wonder why such an experienced creative director would have let this happen on her watch and why Channel 4, which is governed by a public service remit, could broadcast it even though they claim to “Champion unheard voices”, “Inspire change in the way we lead our lives” and “Stand up for diversity across the UK”. I believe by broadcasting this documentary they have not met their own standards and public service remit as they have marginalised and damaged the Tourettes community which is 1 in every 100 people across the UK. If after reading this blog or if you did watch the documentary in question then please take 5 minutes out of your day to visit the Ofcom website https://www.ofcom.org.uk/complaints/complain-about-tv-radio-a-website to officially complain. 

Personally, I believe that Channel 4 should make a public statement of apology to all those people that this documentary has negatively impacted of which there are many.

JoelWPhoto tweeted “You have done our community a huge amount of damage with this appallingly bad ‘documentary’. People are avoiding me because they think I’m contagious. You lied to participants. Shame on you.” Along with Lauren Reid who tweeted “I have TS. You should be utterly ashamed of this show. Children are being rejected by their peers because they think they will catch their Tourette’s. You’ve no idea how utterly devastating this has been for the Tourette’s community. You’ve put us 10 steps back in awareness.”

These are just a few of the many responses from distressed individuals across social media. 

Becca (tourettesbian) who was involved in the documentary even had one of her followers message her after receiving a worrying and misinformed message from her Boss at work.

The message said this: “Sorry to message you like this. A few of the staff saw the documentary on channel 4 the other night about Tourette’s and are now sceptical about working with you in case they catch it from you. Are you actually able to pass on Tourette’s to other people?”

This is just one of the many people that are now being questioned by families, co-workers, teachers, peers or friends about the falsehoods that this documentary from Channel 4 has created. 

I and the Tourette’s community call on Channel 4 to set the record straight and to apologise for the misinformation that they have allowed to be spread and the huge amount of damage that it has caused.

Wilamena

Hello everyone,

I am really excited to let you all know that I was interviewed live on BBC Spotlight News TV on 15th February 2022!

I hope that you are all well and happy new year, as this is my first blog post of 2022 due to a few hectic weeks at school with my GCSE mock exams. However, I can gladly say that they are now over and things are back to normal once again. I am planning some upcoming blogs on Tourette’s Syndrome and the impact on GCSE exams and how I am preparing for these so keep a look out for those over the coming weeks.

Some of you may be aware that last year, I was one of the winners of the 2021 BBC Young Reporter of the year awards. I made a video all about my life with Tourette’s Syndrome and specifically how music affects this. It was an amazing experience and it allowed me to interview other musicians from around the world who also have this often misunderstood condition. My story was all about sharing the message of what I believe the ‘Real Tourette’s Syndrome’ is, without the dramatised and tragic swearing focus that often gets portrayed wrongly in media. If you haven’t seen my video already then please do check it out here:

Now that it has been a year since I was involved in the competition, it is time for the 2022 BBC Young Reporter of the year to begin. Spotlight (the Cornwall regional news station) has asked me to be involved with a live interview where got to share my experience of being involved in the competition and why I think it is important for young people to have access to the media to share their stories and perspectives. I spoke about the video project I put together about music and Tourette’s Syndrome.

If you are aged 11-18 and have an original story idea that you believe the world should be listening to, then here is a link to the young reporter website here: https://www.bbc.co.uk/teach/young-reporter/competition/zghcydm

See you all soon,

Wilamena xx 🙂

I am so lucky to have support from the NHS and school for my Tourette’s Syndrome, OCD and anxiety and it really helps me, but what happens as I get older?

Students and adults can really struggle to access enough support. Typically a student in higher education might only be offered six sessions of support in an academic year – when do you choose to take those sessions?

To fill the gap there are mental health charities and services, and in this new report for BBC Spotlight I take a look at Cornwall Mind and find out why their fund raising art auction is so vital for them and their service users.

With donated art from celebrities such as Toyah Willcox, Alan Titchmarsh, Kim Wilde, Philip Mould, Joe Lycett, Jeffrey Archer and the very best artists from Cornwall you will find something amazing to bid on. The auction ends on Sunday 25th April 2021 at 9pm – so get bidding now and help Cornwall Mind to raise the much needed £20,000 they urgently need.

Wilamena Xx

The BBC have selected me, and the story I submitted for the BBC Young Reporter competition to be one of the winners!

The BBC said “More than 2,500 young people aged 11-18 submitted original and interesting story ideas to the competition, which is in its third year. It gives young people the chance to make their own story with BBC programme teams, producers and reporters.”

My report is titled “Tourette’s, Music & Me” and investigates how musicians with Tourette’s find their tics disappear when playing and performing. It also challenges the stereotype of Tourette’s Syndrome and raises awareness. In my report, that will be shown on BBC TV, I interview several musicians with Tourette’s from around the world, and compare their experiences with my own. I interview several musicians with tourette’s syndrome including percussionist and teacher Joe Rumming, drummer Matt Giordano, pianist Yusuke Osado and composer Charlotte MacGregor-Graham. I also interviewed two of my music teachers, Penny Driver who teachers cello and Jayne Obradovic who teaches me percussion. The video was originally aired on BBC Spotlight, BBC Points West and three times on the national BBC News channel. I was selected as one of two regional winners for the South West, which is an area from Gloucestershire to the Isles of Scilly to Brighton to Reading. The video below has been kindly supplied by the BBC.

I was selected as one of two regional winners for the South West, which is an area from Gloucestershire to the Isles of Scilly to Brighton to Reading.

I have many fascinating interviews to share with you on www.TicTastic.com which I will be releasing over the next few weeks, and I have edited these down to three packages for the BBC.

1. Video for BBC Spotlight and an interview I did with them to be released on Tuesday 16th March on the evening news bulletin live on TV. Please watch! Later in the week BBC Points West will be running the video too.

2. An edited version of the video for the BBC social media pages and BBC website.

3. An edited version of the video to make it suitable for BBC Radio Cornwall, which will be a soundtrack of the interview, this will go out live on Wednesday 17th March at 7.45am with a live interview with myself too.

4. Another edited version suitable for the time slots allowed for the BBC national News channel network which was broadcast nationally across the UK.

I am so excited that my story & Tourette’s syndrome will be getting a wider audience through this process and the following well known reporters & presenters were part of the judging panel:

Huw Edwards, Laura Kuenssberg, and Nikki Fox from BBC News, Radio 1’s Greg James and Katie Thistleton, The One Show’s Alex Jones, BBC Newsbeat’s Roisin Hastie and Ben Mundy, Newsround’s Ricky Boleto and BBC Three reporter Ellie Flynn.