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Tuberous Sclerosis

Tuberous Sclerosis is a rare genetic condition and people within the same family can be affected very differently with different levels of severity. It may also occur as a new mutation, meaning that no one else in the family is affected.

It can cause benign tumours (growths that are not like cancer tumours) to grow in different parts of the body. They often grow on the skin, eyes and on internal organs such as the brain, kidneys, heart and lungs. Children with Tuberous Sclerosis, can have a variety of medical conditions, such as epilepsy, breathing problems, skin changes, kidney problems and fluid on the brain. It can also be associated with learning difficulties, Autism Spectrum Disorder and hyperactivity.

What you can do to help

Speak to your GP if you think your child may have Tuberous Sclerosis. Your Health Visitor and School Nurse can also give advice.

How we can help

There is no cure for Tuberous Sclerosis, but help can given to support your child.

They may be seen by a variety of professionals, including Community Paediatricians, Acute Paediatricians and Geneticists. Community Paediatricians may support your child if needed with assessments for neurodevelopment conditions such as Autism Spectrum Disorder, or to provide medical advice for support for an Education Health Care Plan if extra support is requested at school. Your Health Visitor or School Nurse can also give advice.

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