When you have CGD it is a good idea to have regular appointments with your consultant – in most cases, an immunologist. They will keep an eye on your general health and make sure any problems, such as the level of drugs you are on, or side effects, are picked up early. Having regular blood tests will also help to monitor your state of health.
Another source of advice is your Clinical Nurse Specialist.
Download our ‘Making the most of your appointments‘ leaflet which gives practical advice to make sure you make the most of the valuable time you spend with your doctor and nurse.
Seeing the CGD Consultant
In the UK, the CGD consultants offer a system of ‘shared care’. This means that you see your local consultant regularly and make an annual visit to the CGD consultant. The CGD consultant sees a number of affected patients and will know about new developments in treatment. They will be able to provide an overview of your care and will liaise with the local consultant or other specialists (such as a gastroenterologist who specialises in diseases of the digestive system) you are referred to for treatment.
How is this arranged?
In the UK, ask your local consultant to refer you to a specialist CGD centre. Contact the CGD Clinical Nurse Specialist if you feel you need some advice about this.