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TSC Stories

A big thank you to the New Zealanders affected by TSC who have kindly shared their stories with us.

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Whether you live with TSC or have family/friends with TSC, we would love to hear from you.

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You can send us your story using a video, audio recording or as text to info@tsc.org.nz

Leah's story

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Leah is a founding member of TSCNZ is on the Management Committee.

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In this video, Leah shares her journey of living with TSC, what the support of the community means to her and how she gives back through voluntary work and supporting others.

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You contact Leah via info@tsc.org.nz and watch more of Leah's videos about TSC here: Leah Bos - YouTube 

Lisa's story

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Lisa joined the TSCNZ Management Committee in 2015, she is now our Community Organiser.

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In this video, Lisa talks about how she became involved with TSC through her research work in the UK and how she came to be on the TSCNZ Commitee.

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You can contact Lisa at lisa@tsc.org.nz and watch other videos of her presenting research here: Understanding and diagnosing TSC Associated Neuropsychiatric Disorders (TAND) - Lisa Underwood Lisa Underwood Managing TAND COMPASS Research UoA - YouTube 

Tom's story

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Tom joined the TSCNZ Management Committee in 2021, he is now our Secretary and social media guru.

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In this video, Tom talks about his sister Jo who lived with TSC and the importance of TSCNZ to the community.

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You can contact Tom at secretary@tsc.org.nz and check out his TSCNZ posts on our Instagram

The start of our journey

When our first child, Mac, was about three months old, he started doing funny twitches before he went to sleep. I asked the Plunket nurse. about them at our regular check-up; she dismissed my concerns assuring me they were nothing to worry about. There was no recommendation that we visited our GP if we continued to be concerned.

 

I was quite happy to take to her advice. However, my husband was more cautious. He took Mac to our GP and the seizure word was mentioned for the first time. At this stage we did not know anything about epilepsy. That GP gave us the great advice to try to video the episodes. It was not hard to find an episode to video as he was having them several times a day.

Helen's story (2016)​

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Helen is the President of TSCNZ, she established the charity back in 2014, she has an adult son with TSC.

 

These slides have been adapted from a journal article written by Helen in 2016 and published in Advances in Autism. The paper described one family’s journey from diagnosis to the present.​

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You can contact Helen at president@tsc.org.nz

Helen and Leah.jpg
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