MONITORING TSC

STAY ENGAGED & KNOW WHAT TO WATCH FOR

MONITORING TSC
MONITORING TSC

Nobody knows your body like you do. And when something feels odd, you donít always know what it means. But for people living with tuberous sclerosis complex (TSC), itís especially important to alert your doctor right away when you notice any signs or symptoms.


Things to keep in mind:

  • TSC symptoms may be mild at first, or may not exist at all. For some, it takes years before signs or symptoms of disease develop.
  • It's important to know all the possible symptoms that can occur. But no one person has all signs and symptoms. TSC affects every person in a different way.
  • Many people with TSC may live long and productive lives. People with mild symptoms can often perform normal daily activities. Other people who have more moderate symptoms may need some help. And those with more severe symptoms may require full-time assistance.

Signs and symptoms of TSC can affect many ways the body works, including how well you breathe, how you feel, how your skin looks, how you think, and how you act.

Roll over the body to see how TSC can affect different parts of the body.

Click on the arrows to see how TSC can affect different parts of the body.


Up to 80% develop noncancerous brain tumors called subependymal nodules (SENs). It is thought that in some cases, subependymal giant cell astrocytomas (SEGAs) arise from SENs. Up to 15% of patients develop SEGAs

  • Up to 80% develop noncancerous brain tumors called subependymal nodules (SENs). It is thought that in some cases, subependymal giant cell astrocytomas (SEGAs) arise from SENs. Up to 15% of patients develop SEGAs

  • 30% to 50% develop eye issues, or retinal hamartomas

  • Up to 50% of newborns born with TSC have heart complications, or noncancerous heart tumors called cardiac rhabdomyomas

  • As many as 40% of women with TSC may also be affected with lymphangioleiomyomatosis (LAM). Lung involvement may be observed in approximately 10% to 12% of males with TSC

  • Up to 80% develop noncancerous kidney tumors, or renal angiomyolipomas

  • 90% develop skin features

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