Reach Out October 2018

TSA News
Editorial
Teresa Llewellyn-Evans
This edition of Reach Out highlights
transitions. According to the Macquarie
dictionary, transition (noun) is the passage
from one position, state, stage etc. to
another. To transition (verb) is to move
someone in a gradual or planned way
from one role, position or stage of life to
another. Transitions are a normal part
of life and we are each likely to face many
transitions or changes in our life.
I look back at some of my own transitions.
Some of these went smoothly such as when
I married my husband – I found being engaged
was such an in-between time. Others were extremely
challenging and resulted in lots of tears along the way such as
my transition to becoming what I consider to be a good teacher
which I think took about three years! As parents we try to help
our children cope with changes but it can be more daunting if
you are in the midst of your own transition and trying to cope
with your own challenges. This is what it was like when we
moved back to Sydney after living in Tasmania for eight years.
That was a big move for all of us.
I think most of us remember what it was like to be a
teenager and the angst we went through on that journey to
adulthood. But how much more challenging is that transition
for a young person with TSC? Leah shares two transitions in
her life - when she was a teenager wanting to understand who
she was and later when she had medical complications of TSC.
She shares the things that were difficult and the things that
helped. “Something that helped me was understanding where
the TSC lesions were in my brain. When I understood that
these … were stopping those parts of the brain working well
I was less hard on myself for struggling with these skills.” See
Leah’s article on p.14.
Debbie, TSA president, finds “… speaking to others who
have gone through the same thing or reading a personal story
… very helpful, and the advice helps you feel like you are not
the only one going through these challenges.” See Debbie’s
president’s report on p.4. We have two parents who share
stories of their son or daughter’s transition to adulthood.
Selina describes her son Liam’s transition and their
multi-faceted approach to Liam’s health and
wellbeing. “Living away from us has been
the making of Liam.” See Selina’s article
on p.10. Sally shares three periods of
transition for her daughter Amelia - from
primary to secondary school, Years 11 and
12 and transition to post school. Having
the right staff can make all the difference
to how well our children settle into their
new environments and parents need to be
comfortable that their children are getting the
right level of support. See Sally’s article on p.12.
We also have Dr Brittany Hulbert’s article on
Transitioning patients with tuberous sclerosis complex from
paediatric to adult health care. Brittany says that “early,
ongoing and structured preparation is the key to a successful
transition.” See Brittany’s article on p.17.
Debbie also asks us to remember that “transition can be
positive as it may lead to a new opportunity or turn out better
than we thought it would.”
We also have all our regular features. In Celebrations on
p.8 we celebrate what we do for fun. Clare gives us the latest
research on TSC on p.21 - the success of the international
topical rapamycin clinical trial, more on Australian research
into TSC and autism and a study which suggests that mTOR
inhibitor medicines are safe in younger children with TSC.
Kate takes us through a fundraising snapshot of the last
six months on pp.22-23. We’re excited to have launched the
first Australian Comedy for a Cure event with the help of our
dedicated volunteer committee
We thank everyone who has contributed stories or photos
for this edition of Reach Out, and those who fundraise for the
work of TSA. Your stories and efforts inspire and inform others
who live with TSC, as well as health professionals and the
wider community.
Reach Out Official Journal of Tuberous Sclerosis
Australia, Inc.
18 Central Rd, Beverly Hills NSW 2209
Telephone: 1300 733 435
Website: www.tsa.org.au
Email: info@tsa.org.au
ABN 20 681 174 734
Incorporation no. Y 07116-42
Registered Charity CC25313
Reach Out Editor: Teresa Llewellyn-Evans
reachout@tsa.org.au
Disclaimer
The opinions expressed in this journal are those of the
authors and are not official pronouncements of TSA Inc.
Permission
Permission must be sought from the authors or publishers
to reproduce in any way articles or information contained
in this journal. Once permission is received the source must
be acknowledged.
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