TSA Blog

  • 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

  • My #RareDiseaseDay trip to Westminster - a day I'll never forget!

    My name is Jane Rogers and #IAMTSC - I have Tuberous Sclerosis Complex. I work part-time as a stroke rehabilitation nurse, and, I have been supporting the TSA for many years. Wed 2nd March was a day I'll never forget!! This was the day me and my husband Philip left our home at 4am to catch a coach to London and the Houses of Parliament for Rare Disease Day Reception 2016. Over the years living with TSC has been draining for me with countless hospital appointments and treatments!! N.. ...more