July 5th 2020

In July 2020, Zoë had finished writing her book, and to celebrate she found this flash card she used for counselling to pose for a picture. It says, ‘I feel a wave of enthusiasm for my achievements’, above a smiley face, and below that is says, ‘PROUD’.

She had put such a lot of hard work into writing it, not only revisiting her past and facing up to all the challenges she’d been through having Tuberous Sclerosis and LAM, but researching about those conditions to inform families and people affected by them, and the general public who probably had never heard of TS and LAM. We hadn’t until she developed them either . . .

On her way, she was supported by Dr Sam Amin who ran the Metformin trial at the Bath TSC clinic, which Zoë took part in. He kindly wrote the Foreword, and said:

‘I recall her positivity and determination not to be defined or limited by the condition which affected so many aspects of her life’ . . . ‘I cannot stress enough how important Zoë’s coping mechanisms have been in surmounting all the hurdles she has been faced with’ . . .’Zoë’s book has given me a deeper insight into TSC, from a different angle’.

Zoë also had the kind support from TSA CEO, Louise Fish, who read through the book before it was published, and Gill Hollis and Professor Anne Tattersfield who proof-read the sections on LAM.

Yes, she was so proud that she had got to the end, and we are very proud of her for writing it.

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