Overview
Tuberous sclerosis complex (TSC) is a rare genetic disease that causes noncancerous tumors to grow throughout your body. This condition, sometimes known simply as tuberous sclerosis, can affect people in many ways. People with less severe cases may see very few effects and have a normal lifespan. Severe cases can lead to serious complications.
TSC is a disease that may progress slowly. Some symptoms may begin early in life, but it may take years for others to appear. People with this condition will need to see a healthcare provider regularly throughout their life to monitor this condition.
Who does tuberous sclerosis affect?
TSC is a condition you have when you’re born. Healthcare providers diagnose half of all cases by the time a child reaches 7 months old. However, milder cases may go unnoticed for years. People diagnosed with TSC as children can also have other symptoms diagnosed after they become adults. This condition is equally likely to happen in everyone, with no differences due to sex, race or ethnicity.
How common is tuberous sclerosis?
TSC is rare. There are about 50,000 people who have it in the U.S., and about 1 million have it worldwide.
How does tuberous sclerosis affect my body?
The main effect of TSC is that it causes clusters of cells to grow and become tumors. The most common place for this to happen is your brain. TSC can also cause changes in your skin, especially when you’re very young. Those skin changes are often the first symptom or sign that a person has this condition.
TSC can affect your heart and kidneys, too. Different kinds of growths are common in these organs. Growths in other locations are less common.
Symptoms
When to see a doctor
Complications
- High blood pressure.
- Diabetes.
- Heart failure.
- Some types of heart valve disease.
Prevention
- Control high blood pressure, high cholesterol and diabetes.
- Don't smoke or use tobacco.
- Eat a diet that's low in salt and saturated fat.
- Exercise at least 30 minutes a day on most days of the week unless your health care team says not to.
- Get good sleep. Adults should aim for 7 to 9 hours daily.
- Maintain a healthy weight.
- Reduce and manage stress.
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