Parents and Carers - Read This First
If you are a parent whose child has 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. Genetic conditions just happen and there is nothing you could have done to stop it
- Being told your child has a genetic condition can be shocking, daunting and worrying. 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 is a disorder that prevents the immune system fighting off certain infections.
People with CGD carry a faulty bone marrow gene which means that white blood cells, called phagocytes, don't work properly. As a result, CGD-affected people tend to get frequent bacterial and fungal infections, and need to take daily medication to stay healthy.
Problems can arise and lead to serious illnesses and prolonged periods in hospital. The condition is thought to affect around eight to 10 people in a million.
Why does CGD happen?
CGD is an inherited disorder which means that it is passed from parents to their children. One type of CGD is 'X-linked' (sex-linked) and the other three 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 go for more information?
As parents or carers of a child or young person with CGD, you will probably have loads of questions you want answered. You’ve come to the right place.
At the CGD Society, our aim is to help you, whatever your needs. A good first place for you to start is the ‘Parents and Carers’ section where you will find information on all aspects of life with CGD, from health management through to education and parental rights.
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 ‘Parents and Carers’ 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 to talk through your needs. We are here to help.