TSA Blog

  • #TSA40stories 'A double celebration'

    Vicky Mason writes about how celebrating the TSA’s 40th anniversary also means she celebrates 20 years involvement with the charity. 'I just found out I had TSC in 1997 after having the condition since birth which I didn’t know about. My late mother never ever told me about it and it was ironically the year after her passing that I found out about having the condition. 'It was all down to having what my GP described as having a 'wart' on my s.. ...more

  • #TSA40stories 'What is it like to live with TSC?'

    Describing what living with TSC is like is quite difficult. On the whole I live a normal life. I have a normal level of intelligence, I have a job, an honours degree, and I have strong interpersonal skills. To the outside world, nobody would suspect that I have Tuberous Sclerosis. The main reason being, society doesn’t know what to look for to suggest that I have the condition. I feel however, because I know I have TSC, that .. ...more

  • 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