People are told that they have TSC because of lots of different reasons. But, the Tuberous Sclerosis Association is here to help them no matter what.
What is the normal age someone is told they have TSC
TSC does things to everyone’s bodies differently. This is true even if different people in one family have TSC. This means that a person might be told that they have TSC at any age.
What are some of the first common signs of TSC
Things that might mean that someone is told that they have TSC include:
- If a person has lumps in their heart when they are a baby
- If a person has seizures or ‘fits’ when they are a baby or very little
- If they have marks on their skin that look a bit like leaves. Usually this happens only when a person is a teenager
- If a person has problems with their kidney when they are a grown-up
- If a person has their ‘genes’ (the things that make up the body) tested to see if they have TSC
However, TSC affects everyone differently. You might be told you have TSC but not have the problems listed above.
How a doctor finds out someone has TSC
Usually, a person is told that they have TSC after different tests or scans to check different parts of the body.
If a doctor thinks you might have TSC, they might look to see if you have things that lots of people who TSC also have. This might include patchy skin or lumps in different parts of the body. They might need to do different scans or tests to be sure. This is normal.