Hi! Do you have CGD and want to know why it happens? Or do you have a friend with CGD and want to understand more about it?
CGD - and why it happens
Our genes make us what we are – for instance, they decide whether
we have brown or blue eyes, or black, blonde or red hair. Genes don't
just affect how we look. They go on giving instructions to all our
different cells throughout our lives. A person with CGD does not have
a full set of working genes.
Does this make any difference?
Yes, it does. Certain white blood cells gobble up and kill bacteria
and fungi. A missing or faulty gene means that the white blood cells
(neutrophils) cannot produce a special bleach, which is needed to kill
the bacteria. The bacteria or fungi start to cause infections. In order
to keep well, people with CGD need to take medicines every day. To
help prevent problems, always tell your parents, teacher or doctor
if you feel unwell or if you have any unusual pains. Your mum or dad
will be on the look out for any symptoms and will want to tell the
doctor about any problems immediately. Sometimes a hospital stay is
needed to get things under control again.
Medicines
People with CGD take a number of medicines every day to keep them well.
These will usually be antibiotics.
- Antibacterial medicines fight off bacteria - germs which enter the body through broken skin, for example through cuts and grazes.
- Anti-fungal medicines fight off fungal spores. These can be carried in the air, for example in dusty barns or near mouldy bark chippings.
You might need to
- Take tablets
- Take medicine
- Sometimes, have injections
It is very important to keep taking your medicine, even when you feel great - they will help you stay feeling good.
Are the Scientists and
doctors working on a cure?
Lots of scientists all around the world are working to find a cure
for CGD and other genetic conditions. There are four genes, that if
missing or faulty, cause CGD. All four have been found! New copies
of them have been made in a laboratory. If these new genes can be inserted
into the body, it would mean that the white cells would be able to
kill and digest bacteria. This process, called gene therapy, is the
main hope of a cure for children suffering from CGD and scientists
are working hard to make it happen.
You can Help Yourself Keep Well!
- Take your medicine everyday
- Take great care with cleanliness
- Take care when you are playing - it's important to stay away from old musty buildings, building sites, barns, playgrounds with bark chipping surfaces, anywhere where mould is likely to be
- Don't swim in rivers or lakes - they are teaming with germs!
- Take up a non-contact sport! Having CGD doesn't mean you have to miss out on all the action! How about playing basketball or badminton?. Or you can become a referee or umpire in your favourite sport!
For more information, look at the 'Downloads' page.
IMPORTANT NOTE :
The information contained on this website is intended only as a guideline, not as a substitute for medical advice. Always consult your doctor if you or your child has any CGD symptoms or concerns.
© 2001-2005 The Chronic Granulomatous Disorder (CGD) Research Trust
Registered Charity No. 1003425 email:cgd@cgdrt.co.uk
The CGD Research Trust is a member of the Association of Medical Research Charities (AMRC), the Genetic Interest Group (GiG) and an associate member of the International Patient Organisation of Primary Immunodeficiencies (IPOPI)
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