TSA Blog

  • #Fight4Treatment - The clock is ticking on the lives of TSC patients

    Jayne Spink, CEO of the Tuberous Sclerosis Association, writes about the impact of delays in patients’ access to treatments for tuberous sclerosis complex, highlighting some of the problems with the current system for commissioning medicines in England. Tuberous sclerosis complex (TSC) is a rare genetic condition estimated to affect one million people worldwide. It can lead to tumours on vital organs – most commonly the brain, heart, kidney, skin and lungs. Whilst the impact of TSC.. ...more

  • The Reality of an Individual Funding Route (IFR) application for Everolimus

    Case study – The Price family Dylan Price, 7, has Tuberous Sclerosis Complex and two brain tumours (SEGAs) which are growing and will prove fatal without treatment. Dylan, as well as the SEGA growths, also suffers with epilepsy. Despite this he has developed into a wonderful, sociable, happy little boy who attends mainstream school. He has received Everolimus since March 2016, funded by NHS England through an Individual Funding Request (IFR). This is due to be reviewed ev.. ...more

  • An A-Z (In Rhyme) of TSC

    An A-Z (In Rhyme) of TSC A is for - ANGIOMYOLIPOMAS. B is for BENIGN - astrocytomas. C is for COMPLEX - describing TS. D is for DERMATOLOGY – the skin therefore - no less. E is for EPILEPSY - that’s seizures or fits. F is for FACIAL a rash - Boneheads call zits. G is for GENES –both TSCI and TSCII. H is for HOPE - to find a Cure - let’s do. I is for INDIFFERENCE – towards us we’ve felt. J is for JERKS – like seizures and Ignorant louts... ...more

  • Life with TSC and Autism - Trystan's Story

    This November Trystan will be 30 years old. He lives with Marie, his Mam and Perry his Dad, in Carmarthenshire, Wales, UK.. Because of the difficulty Trystan has in understanding the world around him we often live life as if treading on eggshells. Since he was a baby we have taken each day, one at a time… Back in 1987 when Trystan, our youngest son, was only 8 months old we learned that he had TSC. For him like many others it means a life of dealing with the ef.. ...more