TSA Blog

  • TSA Research: Forthcoming trial of topical sirolimus for facial angiofibromas in TSC

    A facial rash, or facial angiofibromas, is one of the symptoms experienced by many people with TSC. One of the treatments for this is topical sirolimus (rapamycin) – an ointment that is applied directly to the rash. As topical sirolimus is not yet licensed by the European Medicines Agency, funding is not routinely available for it to be prescribed to patients in the UK. The TSA gets lots of enquiries about topical sirolimus and we know just how impo.. ...more

  • #TSA40stories 'Looking for others like me'

    ‘I wonder whether there are many other people like me out there, and if there are I would love to hear from them,’ says mum, grandmother and TSC carer Gail Finan. ‘My husband John has TSC as do two of my adult children. I’m a carer for John and Vicki, our middle daughter. I would love to be able to make contact with others who are in a similar position to me as I think the things we face are a bit different from what parents with young children with TSC face today. There has been so.. ...more

  • #TSA40stories 'Those were my handbag throwing days!'

    In 1970, Victoria Willson (pictured right) was born in North London. A beautiful baby her parents Jean and Norman were besotted with her. They were already no strangers to heartache as their elder daughter Tara had been born in 1966 with spina bifida and Jean had suffered three subsequent miscarriages before Victoria finally came along to complete their family. But their joy was short lived. Victoria was constantly in hospital with infantile spasms and failing to thrive. Furth.. ...more

  • #TSA40stories 'I'd say to anyone - just go for it!'

    ‘We were devastated when our granddaughter Jemima was diagnosed with TSC, and we felt so helpless,’ says Diana Guy, former headteacher and, since 2013, a committed fundraiser for the TSA. ‘It was a very difficult time for us all, and I remember initially having a tremendous feeling of helplessness. ‘But we wanted to do something, anything! So I thought to myself ‘Well, what can I do?’’ Diana, 68, a keen gardener, had already fundraised for other charities through the Nationa.. ...more