Systemic lupus erythrematosus – helping children and teenagers understand why they are affected by this rare and disabling condition | Children's Charity

Systemic lupus erythrematosus – helping children and teenagers understand why they are affected by this rare and disabling condition

Published on 26 May 2015

Research Training Fellowship*: Dr Kate R Webb

Children with a disabling, rare condition called systemic lupus erythrematosus (SLE) may one day benefit from research by Dr Kate Webb of University College London. When this distressing disease starts during childhood, it most typically affects girls of around 11 or 12 years of age.1 Their symptoms vary, but can include skin rashes, fever and fatigue. Sadly, there’s no cure and gaps in understanding make it impossible to answer some important questions that children ask, such as ‘Why me?’, ‘Why now?’ and ‘How will my life be affected?’. Dr Webb hopes her research will help put that right.

How are children’s lives affected now?

“The way in which SLE affects each individual child is different, but symptoms can range from skin rashes, arthritis and low blood counts, to kidney problems, headaches and seizures,” says Dr Webb.

There’s no cure for SLE. Once children have developed the disease, they will have it for the rest of their lives.

“Medications for SLE can ease symptoms,” says Dr Webb. “Unfortunately, though, they often cause side effects, such as weight gain, tiredness and increased susceptibility to infections. Some medication can also affect fertility.”

SLE is unpredictable, causing varying levels of disability. Sadly, it tends to be most severe if it starts during childhood, sometimes proving life threatening.

“Young people with SLE want to know why they’ve got it, why it has started while they’re so young, and how it will affect their lives,” continues Dr Webb. “Unfortunately, it’s impossible to answer these questions properly, which is highly frustrating for everyone concerned.”

How could this research help?

“We know that SLE is more common in girls, and that it often starts during puberty, but we don’t know why,” says Dr Webb. “I am trying to help fill that gap in understanding. Doing so could help answer common questions that young people ask when they develop SLE, such as ‘Why me?’ and ‘Why now?’.”

The symptoms of SLE result from the immune system mistakenly attacking parts of body – such as the skin, blood, brain, joints, kidneys, lungs and heart. Dr Webb is investigating possible reasons for this attack during puberty, by studying how hormonal changes affect the immune system.

“By increasing our understanding of the disease processes involved in SLE, my work could help us to identify possible new approaches to treatment,” says Dr Webb.

Estimates suggest hundreds of children are living with SLE in the UK.2 The need for this research is high.

References

1. Levy DM et al. Systemic lupus erythematosus in children and adolescents. Pediatr Clin North Am 2012; 59: 345–364.

2. Arthritis Research UK. Lupus. http://www.arthritisresearchuk.org/arthritis-information/data-and-statis... Website accessed 10 March 2015.

Project LeaderDr Kate R Webb MBBCh MMed FCPaed (SA) Cert Rheum (SA)
Project team
  • Dr John Y Ioannou PhD FRCP
  • Professor Gary Butler MD FRCPCH
  • Professor Lucy Wedderburn PhD FRCP
LocationDivision of Medicine, Centre for Adolescent Rheumatology, University College London
Other locations
  • Paediatric and Adolescent Medicine and Endocrinology, Institute of Child Health, University College London
Duration3 years
Grant awarded5 February 2015
Start date1 June 2015
End date12 January 2019
Grant amount£206,806.00
Grant codeGN2357

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* Research Training Fellowships:
Each year, Action Medical Research awards these prestigious grants to help the brightest and best doctors and scientists develop their career in medical research

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