Even when people with CGD take antibiotics and anti-fungal medicines every day, they can still get infections. On average, these people will have one serious infection every three to four years, although this varies from person to person.
Many people also have frequent minor infections. About half of all people with CGD have chronic inflammation of the gums (gingivitis) and three-quarters have frequent ulcer-like sores in the mouth. Although these infections are not life threatening, they can be annoying and uncomfortable.
Staying infection-free is important for helping keep you out of hospital and going about your daily life, doing what you want to do. However, it is also important because what happens to you now can make a difference to your health throughout your life.
Preventing infection involves taking your medication and having appropriate vaccinations as well as having regular checks. It also means avoiding situations which put you at extra risk of infection.
Avoiding infection
There are many precautions someone with CGD can take to avoid infection.
• Keep all recommended immunisations up-to-date.
• Don’t work or play with or around mulch, hay, wood chips, thick grass clippings, other garden waste or firewood that has dry rot or old fungi on it. This will help avoid inhalation of high levels of fungi that can cause sudden, severe respiratory problems and infections.
• Stay out of barns, caves, sheds and other dusty or damp areas because there may be fungal spores in them.
• Remember, fungus + CGD = serious health problems.
• Be careful with personal hygiene – brush your teeth twice a day and use mouthwash to reduce the likelihood of developing gingivitis.
• Wash all cuts and scrapes thoroughly with soap and water and follow with antiseptic. Remember to look out for signs of infection and report redness, swelling, hot to touch skin or pus to a doctor or nurse straightaway.
• Always wear shoes or sandals outside.
• Choose playgrounds with a plain dirt or gravel surface – wood chippings harbour fungi.
• Gardening can increase your exposure to moulds, especially if you are dealing with plant pots, leaf mulch or other dead plant material. If you really enjoy gardening discuss this with your doctor or the CGD Clinical Nurse Specialist so that you can reduce your exposure to moulds.
• Avoid going into buildings that are being built or renovated as the dust that’s generated harbours fungi. It’s the old dust rather than new dust that is the main problem so the demolition phase, rather than the rebuilding one, carries the highest risk. Only enter once they’ve been thoroughly cleaned.
• Ask someone else to rip up or replace carpets or tiles. If you are moving, clean the rooms of your new home thoroughly with disinfectant (bleach) before living in them. Do not sleep in the building until this has been done.
• If you use a vapouriser, empty it daily and wash it with bleach to prevent mould.
• If you have fresh cut flowers, add a teaspoon of bleach to the water to prevent mould and algae.
• It’s fine to keep some pets but don’t use wood shavings as bedding. Make sure your pets are up-to-date with recommended immunisations and keep their water dishes and bedding clean. Avoid pets that can carry salmonella, including turtles and lizards (including iguanas).
• Don’t swim in rivers or lakes. Even if they look clean, they are full of bacteria but swimming in a clean, chlorinated pool or safe unpolluted seawater is fine.
• Remember, fever, especially if accompanied by a cough, should be dealt with immediately so seek medical advice.Recognising signs of infection
Some infections, from colds and other viruses, are inevitable. However, it’s still important to try and reduce the number of infections you have. Each time you have an infection, it’s harder to fight the next one off – today’s infections can cause damage that may affect you tomorrow. For example, lots of chest infections can lead to lung scarring which can, in turn, lead to future breathing problems.
One way you can help yourself – and the parents, partners, teachers and doctors keeping an eye on your health – is to learn to identify ‘normal’ infections, as opposed to infections resulting from CGD. You can do this by looking out for the common signs of CGD infection, listed below.
The following signs of infection will help your medical team decide if you need additional medication.
Important signs to monitor
• A fever of 38 degrees C or above
• Warm, tender or swollen areas
• Hard lumps anywhere on the body
• Sores with pus or rashes. All sores containing pus should be investigated by a doctor
• Persistent cough or chest pain
• Persistent diarrhoea
• Frequent or persistent headaches
• Night sweats
• Loss of appetite or weight loss
• Vomiting every time, or nearly every time, you eat
• Pain or difficulty when urinating
• Difficulty swallowing foodIf the medical team suspect a CGD-related infection, it’s best treated early and often needs intravenous (IV) treatment. This can mean staying in hospital, or leaving hospital during the day and returning for overnight infusion (a way to give medicine, usually through a vein) of medicines. In some cases, you may be able to take your drugs at home.
The medical team may need to take a sample of tissue (biopsy) from an infected area, usually using a fine, needle-like tube. They do this to trace the cause of an infection. Sometimes, infected areas will be drained. This usually requires a stay in hospital.
If you’re not sure you have any of these symptoms, or what they mean, ask for help. Talk it through with someone, see your doctor or call the CGD Clinical Nurse Specialist. You can also email the CGD nurse, which is sometimes a bit easier than talking on the phone or face to face.