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Natalie's story – lupus

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A couple of weeks before Christmas 2005 14-year-old Natalie started feeling unwell, developing a sore throat and breathing difficulties.

The Liverpool teenager had barely had a day of illness in the past. However, what followed was a protracted nightmare which resulted in the teenager losing 3 stone, having a litre of fluid drained from her lung and a chest drain in place for five days, and spending eight weeks in hospital.

After the initial sore throat, Natalie came out in a rash all over her body and started to feel extremely unwell. She was given antibiotics for a suspected chest infection; glandular fever and even chronic fatigue syndrome were other possibilities.

Natalie went back and forth to her GP surgery with her worried mum, who also took her to A&E several times. By this time she’d also developed high temperatures, had lost a lot of weight, her muscles ached and she could barely get up from the sofa. Blood tests were inconclusive.

Finally, by March 2006, back in hospital again, a physician at long last realised that either juvenile idiopathic arthritis (JIA) or juvenile lupus could be the cause of Natalie’s health problems. But it still took several more days to admit her with severe lupus. She then spent eight weeks in hospital undergoing further tests and treatment.

‘It was a terrible time – no one knew what was wrong with her and she was very, very poorly,’ says mum Michelle. ‘To go from being such a healthy girl to someone who was so ill was very distressing.’

Natalie was immediately put on steroid tablets and had a biopsy to check her kidney function. Then the fluid was drained from her lung. She was put on powerful drugs, cyclophosphamide, prednisolone and hydroxychloroquine, which slowly brought the disease under control and reduced her high blood pressure.

Astonishingly, given the severity of Natalie’s lupus at the onset, her condition is now stable – although lupus isn’t a curable disease and comes in flare-ups, so she’ll continue to be seen by her rheumatologist on a regular basis.

Despite missing six months of school, Natalie managed to catch up and has recently taken her GCSEs. She now has ambitions to be a children’s nurse. She joined the gym on her recent 16th birthday. Adds her mum: ‘Natalie is a bright girl and she has a very positive attitude. She’s picked up with her school work and her friends. Some nights she still gets tired but the lupus doesn’t really stop her doing anything. She has a check-up at Alder Hey Hospital every three months and the doctors are delighted with how well she has done.’

Neither Natalie nor her mum knows anyone who had ever heard of lupus, let alone childhood lupus, and both are keen that more people should be aware of the condition.

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