Newly Diagnosed Affected Adults
If you have just been diagnosed with CGD, welcome to the site. 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 anyone elses. Genetic conditions just happen and there is nothing you could have done to stop it.
» Being told you have a genetic condition can be shocking, daunting and worrying, but 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 4 to 6 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 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, our aim is to help you, whatever your needs.
A good place for you to start is in the 'Affected Adults' section where you will find information on all aspects of life with CGD, from health management through to employment and your rights.
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 this 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.
The CGD Society
When you have taken a look at our 'Affected Adults' 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 to talk through your needs. We are here to help.
Read more about getting counselling or psychological suppport
Read more about how CGD is inherited
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.