What does it mean for you?

Girls and women with TS are generally healthy but they do need to have regular check ups for life with a doctor who knows about TS to make sure that they remain so.  Depending on your age depends on what might be important to you at that time.

Children

Being on the short side is something that happens in TS therefore one focus is on growing taller.  More often than not you will be on growth hormone injections.  Although your body makes plenty of growth hormone, a little extra has been shown to help you grow taller.  Some of you may also be offered a tablet called oxandrolone which has also been shown to help you grow taller.

Ovaries often don’t work properly in TS therefore your puberty may be affected.  More often than not you will need oestrogen tablets or patches to take you through puberty. 

Let's not forget you are also busy getting on with life at home and school, with family and friends.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you are having problems with school work or with friends as sometimes a visit or a letter to the school can help people understand more about having TS.

Don't forget you also need general health screening once or twice a year.

Younger teenagers - still growing!

By now most of you will be on growth hormone injections, unless you have only just been diagnosed.  As you are still growing you need to keep taking them until you have stopped growing (that means when you are only growing 2cms a year).  Stopping growing happens when you are all the way through puberty.  Remember your body makes plenty of growth hormone, a little extra has been shown to help you grow taller.

Ovaries often don’t work properly in TS therefore your puberty may be affected.  More often than not you will need oestrogen tablets or patches to take you through puberty.  Puberty is when you gradually over quite a few years change from being a child into a woman.  The first changes are developing breasts.  The uterus (womb) also changes shape and eventually gives you periods.

Let's not forget you are also busy getting on with life at home and school or college, with family and friends.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you are having problems with school work or with friends as sometimes a visit or a letter to the school or college can help people understand more about having TS.  Did you know there is a ID card called Validate UK that you can carry with you as a proof of your age?

Don't forget you also need general health screening once or twice a year.

Older teenagers - growing is slowing!

By now most of you will be almost through puberty, this means a few things:
1. that your have developed up top (breasts)
2. that you might have started having periods, most of you will be taking oestrogen tablets or patches (oral contraceptive pill or HRT) to make this happen, a few of you will have your own natural periods.

It also means that you could be very close to stopping growing (this is when you are only growing 2cms a year).  Hopefully you are pleased with everything as you have put in a lot of effort.  The good news is that you can stop your growth hormone injections.

Let's not forget you are also busy getting on with life.  You are probably planning what you want to do after school or college, getting work experience etc.  You are also probably spending more time with your friends and thinking about closer relationships.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you are have any concerns that may help if they are talked through with somebody who understands more about TS.  Did you know there is a ID card called Validate UK that you can carry with you as a proof of your age?

Don't forget you also need general health screening once or twice a year.This focuses on checking that your heart is healthy, your bones are strong, you can hear OK and your immune system is not misbehaving.

Young Adults

You have now made it through puberty and stopped growing.  You will have stopped your growth hormone injections and most of you will be on either HRT or the oral contraceptive pill.  Even though you have now completed puberty because in most of you your body doesn't make any oestrogen you need to keep taking oestrogen to keep you healthy, in particular it is very important for keeping your bones healthy. Hopefully this medication is suiting you but don't forget to mention to your doctor if things aren't quite right or you have some questions about what to expect.  

You also need general health screening once or twice a year. This focuses on checking that your heart is healthy, your bones are strong, you can hear OK and your immune system is not misbehaving.

Let's not forget you are also busy getting on with life.  You are probably either looking for or have started your first job or still studying.  You are also probably thinking about closer relationships.  It's important to try and not let anything get in the way of this.  Don't forget to talk to your family or the doctors if you are have any concerns that may help if they are talked through with somebody who understands more about TS.Thinking about having children of your own can be important at this time of life although not for everybody.  Ovaries often don’t work properly in TS therefore you may need to talk through options available.  There are always options!  If they are working which is more likely if you are having natural periods and not on oestrogen medication you either need to take care not to get pregnant if you don’t want to or if you do want to get pregnant make sure you get a heart check up before you do.

Adult

The key thing for adults with TS is to keep up with general health screening once or twice a year to keep you as well as possible into old age! This focuses on checking that your heart is healthy, your bones are strong, you can hear OK and your immune system is not misbehaving.  If you are on HRT or taking the oral contraceptive pill as most of you will be, you need to stay on this until at least the age of 50.  This is the age that most women stop producing as much oestrogen and their periods stop (called the menopause) and therefore it makes sense for you to stop your oestrogen medication then too.

Support and Further Information

Turner Syndrome Support Society
Tel (Helpline) : 0300 111 7520
Tel 0141 952 8006
website www.tss.org.uk 


Child Growth Foundation

Tel: 020 8995 0257
website www.childgrowthfoundation.org