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Tuberous Sclerosis Complex

Overview

A genetic condition that affects as many as 80,000 Americans, tuberous sclerosis complex doesn’t always manifest at birth. Therefore, the rare disease can take years to diagnose. The main symptoms of tuberous sclerosis complex are the growth of tumors on the brain, kidney, lungs, skin and other organs, as well as skin discoloration.

  • Symptoms

    • Developmental delays
    • Discoloration of the skin, such as white marks or red spots in a butterfly pattern
    • Kidney disease
    • Seizures
    • Tumors on the brain, kidneys, lungs, skin, heart or eyes. Tumors are usually benign (noncancerous).
  • Prevention

    • As tuberous sclerosis complex is a genetic disorder, preventing it is impossible.
  • Diagnosis

    • Medical history and symptom review. The provider will review your child’s symptoms, as well as the parents’ and child’s medical history.
    • Physical examination. Should a review of symptoms indicate tuberous sclerosis complex, a full physical is performed. Additionally, genetic tests may be recommended for confirmation.
    • Imaging tests. For definitive diagnosis, a CT scan, MRI or ultrasound help visualize tumors growing on the brain or other organs.
  • Treatment

    • Medication may be prescribed to manage problematic symptoms from neurofibromatosis (tumor development on nerve tissue) complications.
    • Counseling services are often used to help young patients overcome emotional or mental issues that may accompany the condition.
    • Laser treatment can remove small facial growths, but the growths will usually return.
    • Surgical intervention may be called upon to remove problematic tumors or repair areas damaged by the tumors.
  • Follow-up Care

    • Complete annual medical evaluation to monitor the tumors’ growth and detect any brain- or kidney-related complications, including kidney failure
    • Regular eye examinations to evaluate the effect of the tumors on vision
    • Physical or occupational therapy may be recommended if the tubular sclerosis causes developmental problems.