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Tuberous sclerosis complex is an uncommon, multifaceted disease that causes benign (noncancerous) tumors to grow in the brain and other important organs, such as the heart, lungs, eyes, skin and kidneys. It can affect several functions of the body and trigger a wide array of symptoms, often leading to misdiagnoses that take years to recognize and correct.

Causes of tuberous sclerosis complex

Tuberous sclerosis complex is a genetic disorder that can be caused by mutations, or defects, in the TSC1 or TSC2 gene. While it is a genetic disorder, tuberous sclerosis complex isn’t necessarily passed down from family members—many cases are spontaneous and first result from the patient’s own sporadic gene mutations.

Tuberous sclerosis complex symptoms

Signs of tuberous sclerosis complex can be present at birth or gradually develop with age. Symptoms can vary considerably from person to person, and may involve:

  • Benign tumors that most commonly occur in the brain, lungs, heart, kidneys and skin
  • Kidney cysts, renal cancer and other kidney problems
  • Seizures
  • Lung lesions
  • Mild or severe cognitive impairments
  • Behavior problems, ranging from aggression and hyperactivity to self-harming actions and obsessive compulsive disorder
  • Various of skin abnormalities, including discolorations, dry patches, fleshy tumors or red bumps, that may appear anywhere on the body

It’s important to promptly seek care for any of these physical, behavioral or mental health symptoms, even though they are not likely to be caused by tuberous sclerosis complex.

Our approach to treatment

Moffitt Cancer Center specializes in treating rare and challenging neurological disorders such as tuberous sclerosis complex. In addition to caring for patients with brain cancers and other malignant conditions, the multispecialty team in our Neuro-Oncology Program addresses benign neurological tumors using the latest advancements in treatment, including minimally invasive and computer-navigated procedures.

check mark symbol Medically reviewed by Dr. Peter Forsyth, Chair, Neuro-Oncology Program.

To consult with a Moffitt specialist about tuberous sclerosis complex symptoms or treatment options, contact us at 1-888-663-3488 or complete a new patient registration form online. Virtual visits appointments are also available.