Xeroderma Pigmentosum Support Group
| Funding announced for national centre for rare childhood disease |
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Guy’s and St Thomas’ is to become the national centre for treating children with a rare inherited disease that leaves them vulnerable to sunlight. In collaboration with the University of Sussex and Ninewells Hospital Dundee, the Trust will tackle the recessive genetic disorder Xeroderma Pigmentosa, or XP, which impairs the ability of the body to repair damage to DNA caused by ultraviolet light. It affects about 100 people in the UK and can be a very severe disease, causing skin cancers, eye problems and neurological problems such as hearing loss, learning difficulties or difficulty walking. Dr Bob Sarkany, consultant dermatologist, St John's Institute of Dermatology (Guy's and St Thomas'), led on the application to the National Specialised Services Commissioning Group – a Department of Health committee which commissions highly specialised services – to fund the centre. "Until now, it has been difficult to coordinate all the different specialists," Dr Sarkany said. "But now we can have a clinical set-up where specialists in dermatology, neurology, ophthalmology and other relevant fields can work closely together." The Trust will work with Professor Lehmann's internationally famous diagnostic laboratory service at the University of Sussex, and the photobiology unit at Ninewells Hospital, to formalise a dedicated service for patients suffering from this debilitating disease. Working together, the team will build on their expertise to provide an expert and comprehensive service for patients. The service will be based not only at the Trust in London, but around the country with the XP team working with patients and consultants wherever they are. The centre will also work with the XP Support Group, a charitable Trust founded in 1999 by the parents of a child with the disease. Sandra Webb and her husband Steve first became concerned about their son Alex when he received a sunburn through a car window at just seven weeks old. At seven months he burned in the shade and at 11 months he had his most serious burn on a holiday in Austria; on both occasions he was wearing full sun block. Sandra said: "It is a strikingly difficult way to live for a child, and for the families concerned. Alex's school has been fitted with protective film on all the windows, lights have been checked for their emission of UV light and a welfare assistant has been provided to help apply his sun cream." Alex has to wear a visor whenever he goes out to protect his skin against cancer-inducing damage from daylight.
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