TSA Blog

  • #TSA40stories 'Trust your gut instinct'

    Zoe Clark is 23 and has TSC. She is a bright and verbally adept young woman who loves Pokémon and drawing, and now lives in residential care not far from her family in Gloucestershire. Three years ago, however, Zoe was on the brink of death after the rupture of an AML on one of her kidneys. Zoe’s mum Claire takes up the story. ‘Zoe had only just moved into her own place, supported living,’ says Claire, a nurse. ‘She’d been there a week when she texted me late one .. ...more

  • SCAN Mental Health and Wellbeing - Carolyn and Charlie's story

    ‘I’d put on my armour and march out there – nobody in the system was asking how I was’ It took a TSA T-shirt worn by a participant at a fun run to prompt TSC parent Carolyn Bailey to finally reach out for help. At 47, she had spent the past 18 years battling the NHS, the education system and social services alone - bar for the support of her husband Paul, daughter Holly, 27, and a handful of close friends - on behalf of her teenage son Charlie, who was diagnosed with TSC as a .. ...more

  • SCAN Mental Health and Wellbeing - Ian's Story

    ‘Don’t hide it, don’t deny it’ Ian Green is 54, has a loving family around him and a full time job. Eleven months ago he was contemplating taking his own life. ‘I had meningitis when I was two years old,’ says Ian, ‘and after that I started to have epileptic fits. I have no warning when I am going to fit – some people do, but I don’t – and that can make things a wee bit scary for me and people around me. ‘Sometimes I can go six months without a fit, and other t.. ...more

  • SCAN Mental Health and Wellbeing - Lottie and Ed's story

    Lottie’s story Freddie Norton-Usher is now a very lively 2 and a half year old, but a little over a year ago the Norton-Usher family’s world was turned upside down. ‘Freddie was absolutely fine, completely normal, until one day when, out of the blue, he went limp, completely floppy for about 30 – 40 seconds. We did not know what was going on. It was terrifying and we thought Freddie had died.’ In that instant Lottie and partner Ed’s world change for ever. An ambulance ride.. ...more