Signs & Symptoms

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Signs & Symptoms

Learn more to better manage your TSC

Know the Signs and Symptoms

Signs and symptoms of tuberous sclerosis complex (TSC) can affect how your body works, including how you feel, how your skin looks, how you think, and how you act. The good news is that doctors can help you with each TSC concern, every step of the way.

TSC may cause tumors in your brain, kidneys, lungs, heart, skin, and eyes.

Signs and Symptoms of TSC include:

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If you have seizures, you are not alone. Nine out of 10 people with TSC have them. In fact, seizures are the most common brain (neurologic) symptom of TSC. Ask your doctor what the best treatment option is for you.

TSC commonly causes brain tumors called SENs and SEGAs. About 80% of people with TSC have SENs, and up to 15% have SEGAs. These tumors are not cancerous, but should be watched by your doctor.

SEN, subependymal nodule; SEGA, subependymal giant cell astrocytoma.

TSC kidney tumors are benign, but can grow rapidly. The most important thing you can do is keep regular appointments with your doctor and get regular scans of your kidneys.

TSC can cause skin problems like growths or patches of skin that look different than the surrounding skin. Nine out of 10 people experience a skin problem with TSC. Keeping track of any changes in your skin is important.

Lymphangioleiomyomatosis (LAM) causes lung tumors that lead to breathing problems like those seen with emphysema, asthma, and bronchitis. There are ways to manage your lung tumors.

A small number of patients might have very rare heart tumors, called cardiac rhabdomyomas. These tumors are often detected even before birth, and are usually the first sign of TSC.

TSC can cause several other conditions throughout the body, including in the eyes and mouth. These growths are usually not life-threatening and are fairly common.

 

 

TSCLife is here to help.

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

Patient Support

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What Can You Do?

Take Charge of Your TSC

Track your symptoms and keep regular doctor appointments to monitor your different organs.

See Different Doctors

Specialists are doctors who focus on different conditions. It's important to see different specialists because TSC affects many parts of your body.

Get the Support You Need

Sign up now for free patient support. TSC is a lifelong disease—you don’t have to fight it alone.

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