What does it mean for you? 

You need to see a doctor who knows about Congenital Adrenal Hyperplasia, or CAH for short, at least once/twice a year for a check up or more if you are younger or have particular problems. Doctors need to check that the hormone levels are right for you at your particular age and that you feel well, sometimes you may need a change in the type or dose of hormone treatment. This is for life as CAH doesn’t go away.

Children

One focus is on growing taller and going through puberty as normally as possible. Most of you will be on the steroid medication called hydrocortisone and some of you will also be on a medication called fludrocortisone. Getting the right dose will hopefully allow you to grow normally and go through puberty at a normal time (usually when you are nearly a teenager). Sometimes if the dose of hydrocortisone is too low or you are struggling to take it regularly the high androgen levels can make you end up shorter than you should be. So it is about getting a careful balance. To do this you have to take your hydrocortisone regularly, have regular check ups in clinic and get your androgen levels measured.

Another focus is on being healthy, for example, having a healthy weight, checking your blood pressure is OK.

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 growing up with CAH.

Younger teenagers - still growing!

The focus is still on growing taller and going through puberty as normally as possible. Most of you will be on the steroid medication called hydrocortisone and some of you will also be on medication called fludrocortisone. Getting the right dose will hopefully allow you to grow normally and go through puberty at a normal time (which is about now). Puberty is when ovaries start producing oestrogen in girls. Puberty is when you gradually over quite a few years change from being a child into an adult.  Sometimes if the dose of hydrocortisone is too low or you are struggling to take it regularly the high androgen levels can affect your puberty. So it is about getting a careful balance. To do this you have to take your hydrocortisone regularly, have regular check ups in clinic and get your androgen levels measured.

Another focus is on being healthy, for example, having a healthy weight, checking your blood pressure is OK.

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 can help people understand more about growing up with CAH. Did you know there is an ID card called Validate UK that you can carry with you as a proof of your age?

Older teenagers - growing is slowing!

By now most of you will be almost through puberty. This 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 coming to clinic and taking your medication.  You still need to keep taking your steroid medication, hydrocortisone and, for some, fludrocortisone. Not taking enough hydrocortisone or fludrocortisone can cause problems with how you feel, blood pressure and weight, it can also cause irregular periods and hair where you don’t want it, and you can get more spots than you should. So it is about getting a careful balance. To do this you have to take your hydrocortisone and fludrocortisone medication regularly, have regular check ups in clinic and get your androgen levels measured.

If you have had surgery as a baby this is also a good time to check that everything is OK with your vagina.  Everything may be fine but sometimes a check up can either reassure you that it is or whether further treatment needs be planned to make things OK.  This is a good time to do this as you are old enough to really get involved and start to discuss what you want and when with the doctors and nurses and counsellors.  They know this is a very important and sensitive topic so don't be embarrassed.  This is also a good time because just around the corner you may be considering starting a relationship that if it is the right person you may decide to have sex and a little further around the corner you may want to have children of your own.  Both these events are normal and important for any young women and the doctors and nurses and counsellors want to make sure nothing stands in your way. 

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 have any concerns that may help if they are talked through with somebody who understands more about growing up with CAH.  Did you know there is an ID card called Validate UK that you can carry with you as a proof of your age?

Young adults

You have now made it through puberty and stopped growing.  You will be taking steroid medication, hydrocortisone or you may also be offered or even be on a different steroid medication called prednisolone or dexamethasone. Some of you will also be on fludrocortisone. Getting the balance right for these medication is important as too much or too little can cause problems with how you feel, weight, blood pressure and how strong your bones are, and you can have irregular periods or no periods at all and also hair where you don’t want it. To get the balance right you have to take your hydrocortisone or other steroid medication and, fludrocortisone regularly, have regular check ups in clinic and get your androgen levels measured.

Thinking about having children of your own can be important at this time of life although not for everybody.  Although you can have perfectly healthy children with and without CAH of your own there are some things that you need to think about.

• If you have had surgery as a baby and you haven't had a check up as a teenager this is also a good time to check that everything is OK with your vagina.  Everything may be fine but sometimes a check up can either reassure you that it is or whether further treatment needs be planned to make things OK.  The doctors and nurses and counsellors know this is a very important and sensitive topic so don't be embarrassed.  They want the same as you and that is to make sure nothing stands in your way. 
• Getting the balance of your steroid medication right so that your fertility is not reduced. Periods that are not regular can make it more tricky to fall pregnant. Even if you have these problems there are always options!
• Talking about your genes (and your partner’s genes) as you will pass them on to your baby. By talking about this before you get pregnant means you can give your baby the best care even before they are born.

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 growing up with CAH.

 

Adults

 The key thing for adults with CAH 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 making sure your medication is the right dose and type to keep your hormones at the right level. Getting the balance right for these medication is important as too much or too little can cause problems with how you feel, weight, blood pressure and bone health, irregular periods and hair where you don’t want it. 

Support and further information 

The CAH Support Group is a sub group of CLIMB (Children Living with InheritedMetabolic Diseases) CAH Support Group.
CLIMB Tel: 0800 652 3181

http://www.livingwithcah.com/support_group.html

2 Windrush Close
Flitwick
Bedfordshire
MK45 1PX