another packed day of conference. We have been totally immersed in TSC for the
last few days, I haven’t left the hotel since I arrived on Tuesday.
are definitely being forged, friendships made and access to the big picture of
TSC around the world firmly implanted.
So after a breakfast of biscuits and gravy (not the Bisto variety, something
entirely different!) the day today began with Shelly Meitzler’s story about
being parent to two children with TSC. She held the audience in the palm of her
hand, and there wasn’t a dry eye in the house as she recounted the dreaded blue
lighted trip to the ER. She paid tribute to all of the parents who have gone
before and have paved the way for parents today to have access to more
information and better treatments.
Then we were expertly informed about where we are up to with the use of cannabanoids in treatment of epilepsy. In the UK there have been a number of
news stories and pressure on government to allow the use of cannabanoids and I
see whilst I have been away there has been an announcement on this front.
People with TSC need a range of treatment options that much is clear, but early
intervention is key and has a major impact on the outcomes for people with
I have been to a number of sessions today on TAND – the psychological and
psychiatric impacts of TSC. I was lucky enough to hear Petrus de Vries speak
with such humour, candour and humility. He recounted that less than 20% of
people with TSC receive any assessment or intervention for psycho-social
difficulties. From the parents I have talked to these are some of the biggest
challenges in day to day life with TSC. Petrus said “Families and Mums are
always right.” A good reminder that the expertise lies with parents and
carers and something professionals should heed and act upon.
I have also had the pleasure of sharing this experience with two marvellous TSC parents, AnneMarie Cotton and Carole Hagan. Here are are a couple of their thoughts on the past few days.
“What has stood out for me are the Mums and Dads speaking to the
conference. And hearing amazing professionals talking about great advances in early
treatment and progress towards a cure,” said AnneMarie Cotton.
“What a privilege to have been at this International TSC conference in
Dallas and see the big picture. So much excellent and collaborative research
happening across the globe to advance therapies to alleviate the clinical
manifestations of TSC1 and 2” said Carole Hagan.
So it’s last night dinner tonight and everyone has to dress in blue (the colour
of TS Alliance In the US). I am hoping for a bit of blues music too, we are in
the south after all!
Last thoughts tomorrow before flying back home.