#worldTSCconference - 'Feeling like one of us, and not one of them' by Annemarie Cotton

 

Wednesday 25th July

I really can’t quite believe I am in the airport on my own.  No airport Special Assistance (daughter!), no last minute unpacking because of large bottles of shower gel in the hand luggage (teenage son!) or panicky conversations about locking the back door (husband!).  Instead I am wandering around the duty-free shops trying to find a balance between excitement of heading off to the TSC World Conference and the growing sense of “oh my goodness what do you think you are doing?” if I even let myself think about how far away I am going to be from my family.

Any of you who have attempted an airport, a family holiday, a day out or possibly even a trip to shops with the whole family will understand how strange it felt for me to be sitting on a plane with only myself to think about – well, myself and the three-year-old sitting next to me (with her mum on the other side).  A three-year-old who was very excited and had no intention of sleeping for any of the 8 hour flight.  Ah well that hadn’t actually been part of my plan…..still, nothing a set of headphones and a determined effort to catch up on some films that do not involve Disney princesses couldn’t deal with.

And so to the USA and more specifically Dallas, Texas.  It is about 40 degrees and I am being called ‘maam’ and told to ‘have a nice day’ so I certainly feel Iike I am far from home.  The hotel is massive and I can already see signs of the conference being set up but jet-lag and the long day take over so any exploring will have to wait.

 

Thursday 26th July

At breakfast when I ask for tea the waiter checks that I want ‘hot tea’ – I guess as opposed to the iced tea that is more often drunk here (not surprising given the heat).  Exploring the hotel I bump in to Carole who is here also supported by a TSA bursary.  We recognise each other from our photos shared beforehand and together with Sheila (also from the UK and who’s grand-daughter has TSC) we start to make plans for when the conference starts.  Registration is easy and I am starting to see more and more people who look like they are here for the conference – the giveaway is the big name label everyone is given which says your name and where you come from – not sure if I feel like an evacuee or Paddington Bear but it does make it easy to know who is part of the TSC Community and to start a conversation.  It is however testing my knowledge of USA geography – I am ok with Florida, California, New York and Texas but that leaves a lot of states for me to learn!

 

There are lots of professionals’ meetings going on during the morning but the first session that I can go to is a “Meet and Greet” – I choose the one for parents of Transitioning Young Adults as my daughter is 14 so starting that process.  I meet a lovely group of parents all with children from 13-21 and who come from all over the States, Canada and beyond.  It’s great to hear all of their stories and it just emphasises how wide a spectrum the diagnosis TSC can cover.  I meet a lovely couple from Canada who seemed to not stop smiling, they have 4 teenagers the youngest of whom are 15 year old girls who are twins and both have TSC.  They were telling me how much support they get from their wider family and wouldn’t manage without it.  I also meet a lady from Mumbai, India who has a 13 year old son with TSC and who travels Cincinnati every year to go to the TSC Clinic – I will never complain about travelling to our nearest clinic!  I find it interesting to hear the American parents talk about accessing support and how much of the conversation is about what their medical insurances will pay for – it seems like a minefield and whilst I know that in the UK there can bit a bit of a ‘postcode lottery’ to access clinics/therapies I can’t imagine what it would be like to have to wrestle with medical insurance policies on top of everything else and to know that if you moved to a different state the whole system would be different. 

The Conference Welcome and opening dinner followed - amazing to see so many people all with TSC in common (nearly 900 attendees) and also to meet Clare from the TSA and Liah and Katie also from the UK.  There was also an International Attendees Social in the bar where I chat to a lovely lady from Canada who has TSC as does her son and granddaughter.  That only leaves time to send some photos back home – shouldn’t have sent the one of the cowboy boots in the hotel shop, they are pink and green and the message comes back that my daughter says “yes please to the boots”……they cost $240 so tomorrow I will send photos of some sweets and hope they get the same response!

 

Friday 27th July

A full on day today and it is hard to choose which talks to go to as they all look so interesting.  I think that between us Carole, Clare and I are covering most of them so that we can bring as much information home as possible.  The welcome session is packed and couldn’t have had a better opening that the TSA’s own Dr Chris Kingswood speaking on a personal level about what motivates him in his TSC research.  A theme that will run throughout the conference – the passion that the researchers have for the TSC community as a whole and the people they meet through their research and clinical work.  We also hear about the 2018 Update of the Consensus Clinical Guidelines for Diagnosis, Surveillance and Treatment that will be published at the end of this year – exciting to be at the conference where the world leaders in TSC research are meeting to agree those guidelines.

The rest of the day is a whirlwind as I hear experts talking about the more unusual manifestations of TSC (teeth, bone, liver) and then after lunch go to talks on the treatment options for SEGAs and then Skin Involvement.    Finally a session on The Path to New Drugs for TSC – so much great research and so exciting to hear about the potential for progress towards a cure with mTOR inhibitors.  What an exhausting day but at the end of it I do feel positive about the future for TSC and think that if I had been attending this conference as the parent of a baby there would be a huge amount of hope for treatment options which simply did not exist when my daughter was born only 14 years ago.  There really has been so much progress in that time.  It left me with mixed feelings as I couldn’t help but think ‘If only these treatment options were available back when she was born’.  But they are there now and that is something to feel positive about. 

 

Saturday 28th July

If I thought yesterday was busy…..today we don’t even get a lunch break just a packed lunch to eat during the sessions!  Another full on day with the first talk starting at 8.30 and a chance to hear about preventative trials and Cannabidiol for epilepsy.  Wow – this is definitely a talk that I recommend people access through the TS Alliance website (most of the talks are being filmed).  These researchers are looking at babies who have been diagnosed before birth and are then being given regular EEGs (monitoring brain electrical activity) and then being treated with Vigabatrin BEFORE anyone even sees a seizure.  And they are getting impressive results in terms of how these babies go on to develop. 

The next session I go to is about TAND (TSC Associated Neuropsychiatric Disorders) and one of the speakers is Petrus de Vries – if you haven’t heard him speak search for him on YouTube – he is a great speaker and really knowledgeable about Autism and TSC.  Part of the session is about early intervention for Autism and the results of a trial using an approach called JASPER (Joint Attention, Social Play, Engagement, Regulation) – definitely worth looking into further.  The rest of my day is spent finding out about accessing mTOR Inhibitors outside the USA; brushing up on my understanding of the genetics of TSC; listening to another of Petrus de Vries’ talks this time on building and sustaining relationships.  One of the highlights today was hearing a TSC dad tell us about their family’s difficulties in managing and living with his son’s epilepsy and how he developed a web-based system to track his son’s seizures which is now publically available (seizuretracker.com) and how he has gone on to liaise with epilepsy reseachers so that they can use anonymised data from the app for research into epilepsy and TSC.  That was inspirational to hear.  At another talk I hear from another inspirational TSC mum, this time a lady from Mexico who has a son aged 4 with TSC and when she found there was no protocol for treating her son’s status epilepticus threw herself into getting a protocol written and also  set up the Mexican TS association.  I later meet a friend of hers from Mexico who together with her husband and three-year-old daughter have spent 15 hours on a bus to get to this conference – and I thought my journey was long!

 

Sunday 29th July

Last day today – time for a session on ADHD and Behavioural Challenges which reminds me to make sure I get hold of the latest Consensus Clinical Guidelines when I get home.  One of the speakers makes it clear that TAND behaviours should be screened for at every clinic visit or at least once a year as identifying clusters of behaviours means that they can be treated.  She also underlines the complexity of TS when she points out that ADHD can be hard to diagnose in TSC as you have to take into account other manifestations of TS such as learning disability, anxiety, depression, ASD, sleep disorders, epilepsy, medications!

I don’t make the final session as I need to pack and catch some of the people I have met to say goodbye.  I can’t believe the conference is over – it has been so busy with so much to take in.  I have really felt part of a wider TS Community here and that is something I will take home.   I know that before my daughter was born the TS Community is one that I hadn’t known existed and would never have chosen to be part of without my daughter’s diagnosis.  However, what I need to remember is that it is her community and it is up to us as her parents to make sure she can access that community.  I think she would have loved to have come to this conference and to have been in a place where she was fully accepted for who she is and where we as a family could have looked around us and seen lots of people like her.  I think that is what we all want – to be with people like us and going to TS events and meeting other TS families is what will give her that chance to feel like ‘one of us’ and not ‘one of them’.

Attending this conference has been a fantastic opportunity for me and one for which I am immensely grateful to the TSA.  If anyone gets a chance in the future to do the same I would say I absolutely recommend it and that you should seize the opportunity if it comes your way.     

My daughter was happy with the sweets I brought home – I didn’t mention the cowboy boots again!