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Treating TSC

Management of tuberous sclerosis complex (TSC) will depend on your individual case. There is no treatment for TSC itself. Rather, doctors treat each affected place in the body.

Monitor the Symptoms

It is important to get each of the body areas listed below scanned and monitored every 1 to 3 years, in case new tumors begin to form. The larger tumors grow, the more complications they can cause—especially those in the brain and in the kidneys. But, you can be your own advocate and work with your doctor throughout your life to watch the number and size of your tumors.

If TSC is causing:

Seizures

Doctors will give you medicine(s) to help reduce the amount of seizures you have. Sometimes doctors also recommend a special diet, surgery, or the insertion of a medical device.

If you have:

Tumors in Your Brain

Up to 15% of people with TSC have a brain tumor called a SEGA (subependymal giant cell astrocytoma). The goal of treatment is to shrink and/or remove the tumor. If you or your loved one has a SEGA, talk to your doctor about appropriate management.

If you develop:

Kidney Tumors

About 80% of people with TSC have at least a few kidney tumors called renal angiomyolipomas. If the tumors are growing, the goal of treatment is to shrink and/or remove them. If you or your loved one has kidney tumors, talk to your doctor about appropriate management.

If you have:

Skin Patches or Bumps

There are different creams and other treatments available to reduce or remove skin patches or bumps that are common with TSC.

If you experience:

Lung Problems

There are several medicines your doctor might prescribe to help with breathing problems such as wheezing. These lung problems occur most often in women over 40 years of age.

Patient Support

Join this free program to learn more about TSC.

 

TSCLife is here to help.

Know what to expect and how to talk to your circle of care.

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