TSA Blog

  • #TSA40stories - 'Development of Research and Services for Tuberous Sclerosis at the Institute of Medical Genetics in Cardiff'

    In this article Professor Julian Sampson and Dr Andy Tee of the Institute of Medical Genetics in Cardiff write about the development of research and services for Tuberous Sclerosis Work on tuberous sclerosis at the Institute of Medical Genetics in Cardiff started when Julian Sampson moved there from Glasgow in 1989, bringing his research with him. At that time the genetic basis of tuberous sclerosis was unknown but his work in Glasgow had shown th.. ...more

  • #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