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Tuberous Sclerosis Complex can lead to overgrowth of the skin, which appears as marks and legions.

Skin issues are extremely common in people living with Tuberous Sclerosis Complex (TSC), in the form of different kinds of skin marks or lesions around the body.

It is thought that TSC influences skin changes due to an increase in blood vessels found in the skin, causing overgrowth. Most skin features usually develop in childhood and adolescence.

The extent of skin problems as a result of TSC is unique to each person living with the condition.

Around nine in every 10 people living with TSC also have skin problems

Diagnosing and monitoring TSC-related skin problems

Although skin problems in people living with TSC often develop in childhood or adolescence, the use of an ultraviolet light (called a ‘Wood’s lamp’) during a detailed skin examination might be required to first find the issues.

The Wood’s lamp is painless and allows clinicians to look at the skin from a different light spectrum.

Treating and managing TSC-related skin problems

The biggest impact of skin marks and lesions from TSC is often psychological, with some people finding certain markings an issue in social situations. Treatment options are available for TSC-related skin issues, including creams/ointments, laser therapy and surgery.

It is important that people who have skin issues as a result of living with TSC take extra measures to protect themselves from the sun, such as using suncream (even on cloudy days), avoiding midday sun and wearing broad-brimmed hats.

What are some of the skin issue someone living with TSC might have?

Facial angriofibromas are reddish-pink overgrowths of skin on the face, which cause bumps or markings that commonly occur around the cheeks and nose.

Problems as a result of facial angriofibromas can include bleeding of the growths and psychological problems. Although facial angriofibromas can sometimes resemble acne, standard acne treatment will not improve their appearance.

In childhood, angiofibromas may appear as a redness of the cheeks. The redness is due to an increase in the blood vessels of the skin. Angiofibromas may appear as early as the first year of life, but usually begin to appear when the child is about five-years-old, with their number of prominence often increasing at adolescence.

Hypomelanotic macules are light marks of the skin that have less skin pigment and often resemble an ash leaf. Found in up to nine out of every 10 people living with TSC, hypomelanotic macules are usually present from birth.

Shagreen patches are large and think patches of skin that are usually found on the torso, commonly on the lower back. Around four in every 10 people living with TSC have at least one shagreen patch, which develop as a result of excess tissue developing around the affected area.

As Shagreen patches often occur in areas that are usually covered, treatment is usually not sought by people living with them. However, every individual’s circumstance is different.

Forehead plaques are raised and firm skin markings found on or around the brow and forehead. Forehead plaques can be treated if the plaques are causing psychological or physical irritation.

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