What causes it?

Out of every 2000 girls born 1 girl will have TS which means that in every large school/college there may be other girls with TS and in every town or city there are definitely other girls with TS.

In girls and women with TS, for reasons that we don’t understand, before you are born some of your genes go missing. This means that you may be shorter than expected and your body may work a little differently.

The genes that are missing either make up a whole or part of one of your X chromosomes. Girls usually have two X chromosomes, the other X chromosome is there and it is usually OK. Chromosomes are in pretty well all the cells in the body, in some people almost every cell is missing all or part of a chromosome, in others only some of the cells are affected. You may hear doctors use the word “mosaic” which means some cells are affected some are not.

Questions you could ask your doctor or nurse

  • Can you tell me more about genes and chromosomes?

  • Is all or part of my X chromosome missing?

  • Are all my cells affected or just some?