Keeping Hearts Healthy

In TS your heart can be entirely normal or your heart may also have some differences.

Some of you may have had heart surgery for a narrowing in your aorta called aortic coarctation. Another common finding is having a difference in your aortic valve  – normally it has three bits, called tricuspid (three cusps), to it but in TS it can sometimes have two, called bicuspid (two cusps).

More seriously over time the aorta can get stretched making it larger than it should be called aortic dilatation. This can happen at any age and is serious and needs to be looked for regularly in all women, more regular checks are needed if you have a bicuspid (two bit) aortic valve, high blood pressure or a previous aortic coarctation.This is very important for all girls and women with TS. 

What can I do to keep my heart healthy?

Lots! Make sure you come to clinic for checks and have regular heart scans. Eat healthily and do regular exercise. This will hopefully keep your weight healthy (easily said than done sometimes). A healthy weight means that your blood pressure will be lower and your chance of developing diabetes is lower.

What checks should I be having?

You should have blood pressure checks and checks for diabetes every year and every now and then a check of your lipid levels (fats in the blood). Depending on whether or not you have had a difference on a heart scan or high blood pressure you may have scans frequently every 1 to 2 years or less frequently every 3 to 5 years. Checking your heart out with a scan is particularly important before or at least very early on in pregnancy as soon as you find out.

What should I look out for?

Having regular checks will hopefully reassure you that everything is fine but if you do experience sudden chest or back pain or feeling breathless or dizzy you should definitely get a check up.

Questions you could ask your doctor or nurse

  • When is my next heart scan due?
  • Do I have a bicuspid valve?
  • How can I make my weight healthy?