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Other areas of the body

Other areas of the body that are commonly affected by Tuberous Sclerosis Complex

Tuberous Sclerosis Complex (TSC) commonly affects the brain, kidneys, heart, lungs, skin and eyes. However, the condition can impact upon all areas of the body, including those listed here.

Mouth and teeth

People living with TSC may have overgrowth of the gums (called ‘fibromas’) or grooves where enamel is weaker (‘dental pits’). Fibromas generally do not cause issues, though they can be irritating depending on their location. Dental pits are very common in people living with TSC and are at risk of causing cavities. Therefore, it is important that extra time and care is taken to ensure good oral health in people living with TSC. This includes regular brushing (at least twice a day) and daily flossing, as well as frequent dental checkups.

Angiomyolipomas / AMLS (growths) in organs

Angiomyolipomas (AMLs) are most commonly found in the kidneys of people living with TSC (called ‘renal AMLs’). However, it is also known for AMLs to grow in other organs such as the pancreas, ovaries or liver. Non-renal AMLs generally do not have any symptoms and do not cause serious problems, meaning that no treatment is required.

A specialist clinician my recommend that an AML is investigated further if the AML is usually large, growing or causing issues. If necessary, a specialist for the area that the AML is found can investigate the possibility of its removal.

It is recommended that clinicians look for AMLs in organs at the same time as monitoring other areas of the body that are more commonly impacted upon by TSC, such as the kidneys or heart.

Typically, this would be through a Magnetic Resonance Imaging (MRI) or Computed Tomography (CT) scan, which are both painless and would allow identification of growths or lesions.

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