Reach Out, April 2016, isue 103

Events
2015 Australian Tuberous
Held on the 14 th and 15 th November, 2015 Australian
Tuberous Sclerosis Conference brought together people
with TSC, their families and healthcare professionals
from around Australia to learn more about tuberous
sclerosis and to connect with each other.
This event builds on the success of similar large
events held in conjunction with the TSC Clinic at The
Sydney Children’s Hospital in 2007 and 2011. We
look forward to the next large conference and all
our smaller local events in between. Thank you to
everyone who came together to make the weekend
event so great.
More
than
150
paediatricians
given a TSC update
by Dr Thiele’s
presentation at
the paediatric
neurology
delegates in our two day
family stream, including
in our LAM stream co-hosted
by LAM Australia
In numbers
Delegates
from QLD,
NSW, ACT,
VIC, TAS, WA
and New
Zealand
8
My top five
Jodie Conduit, whose son Logan has TSC, travelled on a TSA
travel grant from Cairns to attend the family stream of the
conference. We asked her to share how the conference has helped
her and Logan manage his TSC.
The biggest thing for me was how
1. relaxed it all was. I felt comfortable
going up and saying hello to Logan’s
specialists, this made me feel more at
ease. It was great knowing we were
all there together getting the same
information. Another highlight was
knowing that Logan’s TSC clinic
appointment was coming up, so a lot
of the information I could bring up
with his team. It helped me feel a bit
more on par with his doctors and more
confident speaking to them.
Meeting other families was wonderful. During the ‘Getting To
2. Know You’ session we were placed in groups according to which
situation we were in. As a parent of a young child with TSC I was
able to meet other parents in similar circumstances and it meant so
much to hear I wasn’t alone in how I felt. Often, being from a remote
community I do find it hard to reach out to others with TSC. Logan
has always been a little bit of a mystery we are often told he is not
“normal” TSC which makes me feel isolated. So it was wonderful to
talk to other parents and feel part of something bigger.
I have to say the highlight for me was meeting Dr Elizabeth
3. Thiele. The first day’s talk was my favourite, and really gave me
a huge lift for the rest of the weekend. Logan was on mTOR inhibitor
medicines for six months at this stage, and I found the explanation of
how this medication was working really simple to understand. This
gave me the ability to explain to my family what this medication was
doing. Every one of her talks and the one on one question time were
phenomenal. I really took so much away from it all. I was fortunate
Reach
Out
health professionals in
our one day medical
stream, from NSW, VIC,
QLD, WA and New
Zealand.
delegates provided with
financial support through
TSA travel grants
during one of the lunch breaks to have a chat with Elizabeth about
my son and get some of her thoughts.
One of my other favourite talks was called Understanding and
4. Diagnosing TAND by Lisa Underwood. Lisa used icebergs as
a way to explain having lots of small psychiatric conditions but not
enough for a full diagnosis. This clicked with me as this is something
we have dealt with since Logan was diagnosed.
The last speech that actually caught me by surprise was from
5. Trapeze. This was a talk about teens who were about to leave
the paediatric system, and how you could make their transition
easier and smoother to adult care. Even though my little one is five, I
found a lot of the information useful, and could see ways of implementing
self-care with Logan even at this age. I am so glad I didn’t
skip this session as I had originally thought of doing.
APRIL 2016 ISSUE 103