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Newly Diagnosed Children and Young People

If you have just been diagnosed with CGD, this is what you need to know:

» CGD is an inherited genetic disorder

» It isn’t down to anything that you did – it is not your fault or that of anyone else.  Genetic conditions just happen and there is nothing you could have done to stop it

» Being told you have CGD might make you feel different from other young people and you may be worrying about how this is going to change the things you do. At the CGD Society, we are here to provide you with information, help and support. You don’t have to feel like you’re facing this alone.


What is CGD?

CGD stands for Chronic Granulomatous Disorder (sometimes called Chronic Granulomatous Disease).

CGD is a disorder that prevents the immune system working properly. So it doesn't fight off certain bacterial and fungal infections as it should do.

People with CGD have a faulty gene (the body’s ‘instructions’) in the bone marrow where white blood cells are made. As a result, some of the white blood cells (known as ‘phagocytes’) don’t work properly.

It means people like you who have CGD tend to get infections a lot and need to take medication every day to stop this happening. But even with medication, you can still have some problems and may find you need to spend time in hospital, often several weeks.


Why does CGD happen?

CGD is an inherited disorder which means that it is passed from parents to their children. There are five variations of CGD; one type of CGD is 'X-linked' (sex-linked) and the other four are 'autosomal recessive'.

An X-linked disorder means the CGD-affected gene comes from the mother and that her daughters will be carriers and her sons will all be affected by the condition. An autosomal recessive disorder is when a condition or trait develops because two copies of an abnormal gene – one from each parent – are present.


Where do I get more information?

As someone who has just been diagnosed with CGD, you will probably have loads of questions you want answered. You’ve come to the right place.

At the CGD Society website, we aim is to help you, whatever your needs. A good first place for you to start is in the ‘Children and Young People’ section where you will find information on all aspects of life with CGD, from what to do if you want to talk to someone and how to stay fit and well to things you may be worrying about.


The CGD Society

We offer support to CGD-affected people and their families, information about the condition and research into CGD in the UK and around the world. These things affect the lives of people with CGD which is why we are glad you’ve taken this first step to visit the site.

We hope you will visit regularly as a way of finding out information about the condition. Please do use the site to connect with experts who can help you and others living with CGD.


What next?

When you have taken a look at our ‘Children and Young People’ section, you will hopefully find a lot of the information you need. But it’s only natural that you’ll have more questions and will probably want to speak to someone about it.

Contact us at the CGD Society using the form below, either yourself or get your parents to help you. We are here to help.

This information was reviewed by the CGD Clinical Nurse Specialist, March 2020



More information

Read more about having children.

Read more about the different types of CGD.

Read more about getting counselling or psychological suppport

Our website contains a wealth of information to help and support you. If you are not able to find the answer to a specific question, feel free to contact us using the form at the bottom of the page or by emailing or calling us.  We are here to help.