‘Why is this happening to me?’ ‘How is CGD going to affect my life?’ ‘What can I do to make myself feel better?’
These are all common questions children and young people ask when they find out they have CGD.
We offer some answers below.
How CGD can make you feel
Tired. CGD is unpredictable. Sometimes, you’ll feel OK. But other times you'll be ill and won’t want to do much. Take time to get well when you feel like this.
Different. You may not be as tall as your friends. That’s because you can’t absorb the nutrition from food so effectively. Also, a lot of your energy will be spent fighting infection.
Fed up with taking pills every day. Taking tablets day in, day out can bring you down. After all, none of your friends have to, do they? But remember: you need them. Medication will help you live as normal a life as possible, like your friends do.
Like other people don't understand. People can be very supportive. But sometimes they might not be. They may say things like ‘Will you grow out of it?’ or ‘I know just how you feel’, when they don’t have a clue. CGD can make you feel isolated.
Like you can't join in with your friends. Having to avoid places like playgrounds with wood chips. Not being able to go on school trips which involve dusty buildings. These are just a couple of things friends may be able to do that you can't. And this can make you feel different.
Those are some of the downsides of CGD. But let’s concentrate on the positive. You can enjoy your life despite having the condition – there’s no need to miss out!
What can you do to make yourself feel good? Here’s a list to start you off:
• Physical activities. Riding bikes or scooters, playing tennis, football, golf or badminton and fencing are all sports that people with CGD can try safely. Just remember to stretch before and after and drink water to keep yourself hydrated.
• Swimming. A great activity – just make sure you do it in a clean, well-chlorinated pool.
• Drama and films. You could join a drama group or go to the cinema with your friends.
• Youth clubs. Hanging out and playing pool or just chatting with friends, youth clubs are a safe and fun place to relax.
• Ten-pin bowling. Exercise and laughs, all in one place! Challenge your friends – make it a regular outing.
• Art and crafts. Why not try something like making greetings cards, knitting or sewing?
• Gardening. Grow your own vegetables or flowers. Just make sure you wear a surgical mask to filter the air.
• Walking and visiting play parks. This is fine as long as you steer clear of parks with wood or bark chippings around or underneath play areas – you can pick up infections from these.
Things to avoid if you have CGD
Having CGD makes you prone to infection. Unfortunately, that means you can’t take part in some activities. But, on the bright side, notice that there are fewer things you can do than things you can’t!
Things to avoid include:
• Playing in playgrounds or parks with wood or bark chippings around or underneath play areas. These can contain fungal spores, and cause infection.
• Going barefoot outside.
• Swimming in lakes, rivers and canals – harmful bacteria live in the water.
• Playing in barns, caves and other dusty or damp areas.
• Using wood shavings, hay, straw or sawdust as bedding for your pets. These can contain fungus and bacteria. However, apart from turtles and lizards (which are known to carry salmonella), having a pet is totally fine.
Talk to someone
If you have CGD, you might struggle with your emotions. You could feel afraid, angry, frustrated, fed-up – or a mixture of all these things.
It's important to talk about how you feel, whether it's with your parents, another family member, friends or a teacher.
If you want someone else to talk to, your GP may be able to help. They can refer you to a counsellor or local psychology services.
You may also be able to refer yourself to a counsellor and psychology services too through a service called Improving Access to Psychological Therapies (IAPT). Visit the IAPT website to see a list of services in your region.
This information was reviewed by the CGD Clinical Nurse Specialist, March 2020
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.