TSA Blog

  • #TSA40stories - 'Maybe tomorrow'

    Learning about TSC was a journey I never wanted to make, writes Dr Chris Kingswood, Consultant Nephrologist and Head of Research Strategy for the TSA. My first experience, as a young medical student, was to visit a long stay ward for severely disabled children. I decided two things; not to be a children’s doctor and never to look after young people affected by a devastating illness like TSC. It was just too tough. Fast-forward 12 years and my conte.. ...more

  • #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