Twenty-three years ago, when I was 7 months old, the diagnosis of Tuberous Sclerosis Complex(TSC) came as a complete shock to my mum and dad.  It was a genetic condition they had never heard of and as I had already had had infantile spasms (which are severe fits) before the diagnosis no-one could tell them just how TSC would affect me and my development – it was a matter of wait and see. Fortunately for me, the medication I was given straightaway at diagnosis stopped my fits and to date they haven’t returned. However due to TSC, amongst other things, I have mild learning difficulties, I am autistic, I have angiofibroma’s on my face and growths in my brain, kidneys (including a particularly large one in my left kidney called an angiomyolipoma) and a retinal astrocytoma in one of my eyes. TSC has affected my life in many ways but I don’t let it rule my life and it would be really awesome if you could donate to help me raise funds for the TSA.

TSC can cause growths in the brain, heart, eyes, kidneys, lungs and on the skin. People with TSC may also have epilepsy, learning disabilities, autism spectrum disorder and renal problems. The unpredictability of the condition makes it very difficult for families to cope with – symptoms can vary considerably with some people showing few symptoms while others are very severely affected. Symptoms may also become more apparent as a child grows and develops. The Tuberous Sclerosis Association (TSA) http://www.tuberous-sclerosis.org/about-tsc.html provides vital practical support for families, and funds research to find a cure for this potentially devastating condition. Every family who has someone affected by TSC hopes for more effective treatments and eventually a cure for the condition. Two of the genes which cause TSC have now been discovered, and recently there have been major advances in drug therapies.  

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