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My neice Emily-Kate has the condition Tuberous Sclerosis Complex. 

We are attempting to raise money for research to get progress to help with this condition as it is not a very common disorder with only 1 in 8000 being effected. We need to raise money for the charity for support and research for these children and also adult sufferers and their families and we need all the help you can give. 

Emily has 3 tumours in her brain from this which has caused Epilepsy which has to be controlled with medication and resulted in health complications.

Recently she was diagnosed with mulitple tumours in her kidneys and also a one in her liver.

These are benign tumours but can grow or lead to further complications.

She is monitored regularly and is at present under going tests at hospital.

What is Tuberous Sclerosis Complex (TSC)?

TSC is a complex genetic condition caused by an alteration in a gene. People with TSC have growths, sometimes called tubers or lesions in different organs of the body (brain, heart, eyes, skin, kidneys, lungs) and may have epilepsy, learning disabilities, autism spectrum disorder and kidney problems. Symptoms vary from one person to another with some people showing very few symptoms and others more severely affected.

How common is it?

Tuberous Sclerosis Complex is more common than generally recognised. This is partly because there are people with the condition who remain undiagnosed, usually because they are symptom free. It is thought to affect around 1 in 8,000 new births and there are around 8,000 affected people in the UK alone.

What is the outlook?

The effects of TSC are very variable and the outlook depends upon the extent of organ involvement and appropriate monitoring and care. About 50% of people with TSC are intellectually unimpaired and lead normal lives, with the remainder having learning disabilities to a greater or lesser extent.

What is the treatment? Is there a cure?

Unfortunately there is no cure for TSC but there is treatment for a number of its symptoms and patients should be monitored regularly so that symptoms can be picked up and treated appropriately.

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