Although the vast majority of lupus patients are women (9 out of 10), men and children can also develop lupus.
Some children develop a visible rash whereas others have general feelings of being unwell. You can imagine it's difficult for a doctor to diagnose a problem if a parent reports their teenager is depressed, sleeping all the time and has aching joints. This is likely to be overlooked as typical behaviour for a teenager.
As children have been ill for longer before a diagnosis they often have more severe symptoms and are more likely to have organ involvement.
As with adults, paediatric lupus is more common in certain ethnic groups. The average age for diagnosis is 12 and girls are 4 times as likely to have lupus than boys. Lupus can rarely affect very young children under 5 years old.
Children and adults both experience flares of lupus, when lupus becomes active. The flares in children are particularly triggered by infections, sunlight, stress and exhaustion.
There are a lot of problems that may be experienced by children after a diagnosis of lupus. It's difficult enough being an adult and receiving the diagnosis, but a child will be trying to cope with the symptoms and taking new medications (and possibly their side effects). They will also be trying to keep up with school and friends when they are feeling tired and unwell. Coping with body image problems such as skin rashes and drug side effects can be especially difficult.
Parents may feel helpless when their child is diagnosed with a chronic illness and may be tempted to 'wrap them in cotton wool', whereas the best course of action is to try and keep things as 'normal' as possible as they still need to experience being a child with all its challenges. They should be encouraged to pursue activities they enjoy, as much as they can.
Parents obviously need to monitor their child, for example, ensure they are taking their medication, wearing sunscreen (sun protection is one of the most important things you can do), ensuring they get a good nights sleep, good nutritious diet and watching for when they may have reached their limits and need to rest.
There is currently no cure for lupus so your child will have the condition into adulthood. It's therefore a good idea to get them involved as soon as possible in the management of their lupus. Experts recommend children keeping a diary of their symptoms, flares, how they feel mentally & physically, triggers etc. They should be taught about their medication and when they take it, get them involved in organising doctors appointments, collecting prescriptions etc. All these things will be beneficial when it comes to them having to be responsible for themselves in later life.
Everyone who has lupus is different but much of the information for adults with lupus applies to children too, so you should educate yourself about lupus as much as possible and also educate your child's family/friends/neighbours/teachers etc. There's a very good article on explaining my child's lupus to others here.
Click here to read a personal account, from Angie Barwick RGN, about having a daughter with lupus.
This is a rare and temporary form of lupus which affects a small number of babies and is present at birth. It is a separate condition and not an infant form of systemic lupus erythematosus. It occurs when the mothers have anti-SSA/Ro and/or anti-SSB/La antibodies which are passed to the baby via the placenta.
Babies often have the characteristic red rash most commonly on the scalp or face, it's present at birth or develops within a few weeks.
Most of the symptoms of Neonatal lupus (skin rash and low blood cell counts) disappear within the first few months. However the most serious symptom; congenital heart block (which causes a slow heartbeat, below 120bpm) is permanent and occurs in approximately 2 out of 100 babies born to mothers with the antibodies. Babies with congenital heart block will eventually need to be fitted with a pacemaker.
Women with lupus who have these antibodies will have to have a discussion about the risks of neonatal lupus before they become pregnant. During the pregnancy the baby's heart rate will need to be monitored regularly. It is now recognised that hydroxychloroquine, a standard lupus medication, is not only safe in pregnancy but can substantially reduce the risk of the baby developing neonatal lupus syndrome.