How did they find out you had it?

Sometimes they know that you have TS before you are even born because of tests that your mum had.  Sometimes it is because you had something about you that made the doctors think you just might have TS.

That could be a range of things including puffy hands or feet or heart problems as a baby, being on the short side as a child or problems starting puberty or with your periods as a teenager.

They check whether you have TS by doing a blood test. The blood test is sent to the genetics lab where they look carefully at genes and chromosomes.  They study a certain number of cells to check if all the cells or some of the cells are missing all or part of an X chromosone

Questions you could ask your doctor or nurse

  • When did they find out that I had TS?

  • What was it particularly that made the doctors check whether I had TS?

  • Why wasn’t it picked up earlier?