Brother and sister must wear hat and gloves in summer as sunlight causes skin to swell
Children go out in summer with UV protective umbrellas
18:03 GMT, 30 July 2012
Sarah, 7, and Mathew, 5, must both take extreme care in summer
A brother and sister can't venture out into the summer sun without wearing a heavy coat, gloves and hat, due to an incurable skin condition.
Sarah and Matthew Chapman suffer from Erythropoietic Protoporphyria, which causes their skin to swell after even a few seconds in the sunlight.
Sarah, seven and little brother Matthew, five, have to wear a hat and gloves and protect their skin with sun block and umbrella if they go outside.
EPP is thought to be caused by a ‘faulty’ gene and parents Gillian and Bryan decided not to have Matthew tested after Sarah was diagnosed in 2011.
But the family, from Tyne and Wear, have been dealt another blow as Matthew was recently diagnosed with the illness as well.
Mrs Chapman said: 'It has been a big blow to us. We had decided not to have Matthew tested for the condition after Sarah’s diagnosis, but he had been playing out one day and came in screaming and rubbing his hands.
'It was exactly what had happened with Sarah, so we took him to the RVI.
'He was tested and unfortunately it came back positive.
'We have taken it a lot calmer this time, as we’ve seen how Sarah has coped with it and how she does live a normal life as can be.
'And as Matthew is aware of the condition, because of Sarah, he knows what he has to do.'
The siblings, who attend the same primary school in West Bolden, are believed to be only a handful of children in the UK diagnosed with the condition.
The children must go out with UV umbrellas
Mrs Chapman said: 'The school has been really supportive, but I am really keen to raise awareness of the condition, so people understand why Sarah and now Matthew are dressed the way they are and why they are walking around with UV umbrellas.
'The past few days with the weather being really hot, I have really felt for
'While everyone is walking around in summer dresses, they are having to wear their hats, gloves and coats.'
The family are in the process of organising fundraising ventures in a bid to
raise awareness of Erythropoietic Protoporphyria.
Porphyrins are chemicals that are needed for making
blood and enzymes within the body. When a problem arises in the porphyrin chemical pathway there is a built up of chemicals in the body, making the skin sensitive to UV light.
The painful swelling of the skin causes a burning sensation. This may be relieved by
cooling the affected areas in cold water. While some people have the condition for their whole lifetimes it does settle and disappear in others.