Reach Out October 2018

Personal Stories
Janet Sharp, Helen Willacy and Leah at the launch of Tuberous Sclerosis Complex New Zealand in 2014
doctor who knows about TSC, they are more of a psychiatrist
to me even though that’s not what they’re trained in.
I still struggle with when to tell people about TSC, both
I do think if TSC was
normalised earlier in my life and I
had met other people with TSC, I
may not have felt so alone for so
long and had that feeling of being
a square peg in a round hole.
When I met other adults with TSC
through the internet and then face
to face it was total acceptance and
I felt at home.
new friends and also romantic relationships. When people
meet me in real life they can see that something is different on
my skin. If I tell them straight away, it is a lot for them to take
in and sometimes I never see them again.
Grief and trauma is something I live with every day. I
imagine it is similar to what a parent goes through after they
have a child with TSC or another disability. When I think
about TSC it brings back all the pain that TSC has caused me
and it’s like a companion you can’t let go of.
Being part of a support group was huge for me. It wasn’t
around when I was younger partly because I didn’t want to
confront TSC. I know every parent is different and some will
not want to overwhelm their child with TSC because they
themselves have been overwhelmed. I do think if TSC was
normalised earlier in my life and I had met other people with
TSC, I may not have felt so alone for so long and had that
feeling of being a square peg in a round hole. When I met
other adults with TSC through the internet and then face to
face it was total acceptance and I felt at home.
I know my Mum considered taking me to a meeting with
other people with TSC but she was concerned that, because
TSC had affected me mildly, this may have a negative impact
on those families who lived with worse effects of TSC. This
sort of opportunity would have been an important part of
figuring out my identity. I think parents of children with TSC
should not be held back by these fears and it will help both the
parents and the child with TSC to heal.
I recommend that young people with TSC do talk about it
and find people that are similar to you and can relate to you.
My other recommendations for young people with TSC are to
keep busy, work on your strengths, develop your interests and
hobbies, interact with people in whatever way you can and,
most of all, try not to let TSC consume you.
I am a warrior and a survivor and I do have to jump more
hurdles than an average person without a disability, but I have
proud moments when I achieve things in my life even if this
happens later than the average person.
I know I am more resilient because of what I have gone
through because of TSC. I have found strength in educating
others and telling my story to both medical professionals and
the wider community. I am proud of those moments.
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