By Jane Elliott
BBC News, health reporter
Like many teenagers around the country Natalie Kirkham is eagerly and nervously awaiting the results of her GCSE's.
Natalie's kidneys and lungs were at risk
If she gets the grades she wants the 16-year-old from Liverpool will be off to sixth form college and then hopes to train as either a nursery nurse or an accountant.
Her mum, Shelly, is confident her eldest daughter will do well, but admits it has been a struggle, with Natalie missing nearly six months of school.
"Natalie had been a really healthy child, who had hardly had a day off sick," Shelly said.
But just before Christmas 2005 she became very ill. First she had a sore throat which developed into serious breathing difficulties.
At first doctors were bemused, then they suspected glandular fever, then chronic fatigue syndrome.
She developed a rash all over her body and was given antibiotics for a suspected chest infection.
Her worried parents took her to A&E, but she got worse, losing weight, complaining of aching muscles and a high temperature.
Tests could not pinpoint the cause.
Then she saw a doctor who suspected that Natalie had either arthritis or lupus.
Systemic lupus erythematosus, or "lupus" as it is commonly know as, is a chronic relapsing and remitting autoimmune disorder that can affect any part of the body.
Fifteen to 20% of patients develop lupus in childhood or adolescence. It is a life-long and potentially life-threatening disease with no known cure.
Children are more likely to die from it and get more organ damage than adults.
Scientists worried that lupus in children has been a neglected area are targeting it for research and setting up a database to study the disease in more detail.
Lupus is often difficult to diagnose because its symptoms mimic those of other conditions.
Shelly said: "We had never heard of lupus. We did not know what it was at all. And a lot of the doctors didn't seem to know what it is.
"When she was so ill we kept on taking her to the doctors who kept on coming up with different diagnoses.
"If we had not been so persistent things could have been so much worse."
Natalie spent two months in hospital and needed a litre of fluid drained from her lungs. She lost three stones in weight and her kidneys were near to collapse.
Lupus is difficult to diagnose
Shelly said: "If it had been left any longer Natalie would have had kidney failure.
"She was very sick and needed nine months of chemotherapy to fight the lupus."
"It was horrendous, she was so ill.
"She missed more than half a year at school and they thought she might have to stay back a year, but she did not want that and we did not want that.
"She has worked so hard."
Natalie is on steroids and needs regular check-ups at Alder Hey hospital, Liverpool.
More research is needed
Now medics are to conduct studies into lupus and children specifically.
Dr ZoŽ McLaren, a specialist registrar in rheumatology, and colleague Dr Angela Midgely are to study the importance of white blood cells called neutrophils and to find out what part they play in the development of the condition - in lupus the immune system and especially the white blood cells are affected.
And their supervisor Dr Michael Beresford, at Liverpool University, has set up a nationwide database of child lupus patients to observe the condition as well as create a research tool for clinical trials.
Dr McLaren explained that little was currently known about the disease and its affect on children.
"When children present with lupus they tend to have the more severe symptoms and we don't know whether that is because they are more severe initially or whether we are diagnosing them later.
"Lupus is very difficult to diagnose because children have so many different symptoms - the milder symptoms can vary from fatigue and mood changes to joint pains, which could also be put down to growing pains."
Dr Beresford added that because current research had been carried out on adults that it was not all applicable to children.
He said that the drugs used to treat lupus were very strong and could have devastating side affects, including causing malignancies and fertility problems.
And the younger the patient is, the longer they may need to take the drugs.
A spokeswoman for the Arthritis Research Campaign, which funded Dr McLaren's research, said: "It's not widely known that lupus can affect children and teenagers, and Dr McLaren's fellowship could throw more light on how the disease develops.
"We hope this will lead to improved treatment for young people like Natalie in coping with this potentially very serious condition."
Dr Beresford's work is funded by Alder Hey Hospital and Lupus UK.