TSC-RELATED SKIN CONDITIONS

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A skin lesion is a growth or patch of skin that appears differently from the rest of the skin. Some people have skin changes associated with tuberous sclerosis complex (TSC) that can barely be seen. Others may have growths on the skin that cause pain or bleed easily. In addition, tumors on the skin often appear in places that are highly visible, such as the face.

These skin features can be found in people of all ages, and occur in most TSC cases. A physical exam can help detect these lesions.

More than 90% of all TSC patients experience skin lesions

Signs & Symptoms

  • Hypomelanotic macules

    Lighter patches of skin that may appear in different shapes on the back of the body, arms, legs, head, or neck

    Hypomelanotic macules
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  • Angiofibromas

    Noncancerous tumors made up mostly of fibrous tissue

    Angiofibromas
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  • Fibrous cephalic plaque

    A large area of elevated pink skin found on the forehead

    Fibrous cephalic plaque
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  • Ungual fibromas

    Non–life-threatening tumors that occur around the fingernails and toes

    Ungual fibromas
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  • Shagreen patches

    Areas of thick, leathery, pebbly skin usually located on the lower back

    Shagreen patches
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Stay Alert

Some TSC skin lesions may appear at birth. Others develop later in childhood or even in adulthood. But most people with TSC eventually have at least one skin lesion. So keeping track of any changes in your skin is important.

Here's What You Can Do

  • Get your skin examined on a regular basis and speak with your doctor about lesions
  • Note skin changes to see if a pattern emerges
  • Tell your doctor right away if you find patches, bumps, or discolored marks, as this may be a sign that your TSC symptoms are changing
  • Download the TSC Central mobile app for monitoring TSC. You can track appointments, symptoms, test results, and more

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