Tuberous Sclerosis Complex (TSC)
What Is Tuberous Sclerosis?
If you have tuberous sclerosis complex (TSC), your cells don’t stop dividing when they should. This means you get tumors in lots of places in your body. They aren’t cancer, but they can cause problems where they’re growing. There are treatments available that can shrink the tumors and make you more comfortable.
Every case is different. You might get TSC in certain parts of your body, and TSC might affect someone else differently. The tumors can look like thick or light patches on your skin, and if they're in your lungs, they can cause breathing problems.
Treatments can help you manage your symptoms and live an independent life.
Between 1 million and 2 million people around the world have this condition.
You get TSC because of a problem in your genes. For most people, it’s caused by changes that happened when your cells were first coming together or when you were just an embryo.
About a third of people inherit TSC from a parent. If one of your parents has it, you have a 50% chance of getting it.
Symptoms usually show up early, shortly after birth. But they can also appear later in life.
Your symptoms depend on how many tumors you have, how big they are, and where they are. When you have TSC, all of that can change throughout your life.
Tumors in a kidney can stop it from working like it should. They can also cause bleeding inside your body or high blood pressure.
Tumors in your heart usually happen when you're young, and they shrink over time. But they can block blood flow or cause problems with your heart rhythm.
Lung tumors can make you short of breath, even after mild exercise. They can also cause a cough or make your lung collapse.
Tumors in your brain could cause:
- Seizures, which can be mild at first
- Behavior changes, such as temper tantrums, anxiety, or sleep problems
- Nausea or headaches
- Problems such as autism and developmental delays
Tumors in your eyes can make you see double or give you blurry vision.
In other places in your body, you may have patches of different color skin and dark or light growths that might look like warts.
In your mouth, tuberous sclerosis can weaken the enamel on your teeth or make your gums overgrow.
Getting a Diagnosis
With so many different symptoms, diagnosing this condition can be tricky.
Your doctor will talk with you before doing any testing, asking questions such as:
- What did you notice that brought you here today? When did it start?
- Have you had seizures? If so, what happens? How long do they last? How often?
- How often do you have headaches? How bad are they?
- Does anyone else in your family have seizures or epilepsy?
- Does anyone in your family have TSC?