What is Epidermolysis Bullosa
A BABY born with an extremely rare skin disease which means his skin is as fragile as butterfly wings may not live to see Christmas.His parents Jade, 31 and Lee, 44, are maintaining a bedside vigil while doctors wait to see if he becomes stable enough to perform a potentially life-extendingNow, Lee and Jade are desperately speaking out to find out what other parents with children who have EB have done.
EB is a severe genetic skin disorder that affects around 5,000 sufferers in the UK, and only 500,000 worldwide.In healthy skin, proteins hold the two layers together so they do not move separately.Heat exacerbates the condition.There are three main types of EB and many more variants of the condition, with experts currently identifying 27 in total.Uzziah has a very severe form - 90 per cent of babies who have it are unable to survive in their first year, according to the NHS.
While the tot needs an operation to correct some of his other unrelated life-threatening issues - like a blockage in his intestine.Lee said: "We've got a very, very short timeframe with him."My baby boy is critically ill with this condition." While doctors do the best they can for Uzziah, Lee and Jade need to go for genetic blood tests, to see if they're carriers of EB.Huw Edwards tried to lure young colleague to hotel room after Philip’s funeralPeople who suffer from EB have very fragile skin, and any trauma or friction can cause painful blisters.
There are three main types of EB and many more variants of the condition, with experts currently identifying 27 in total.At the moment there is no cure for EB.Medical professionals work with families to decide what treatment is best for their child, which could include popping blisters with a sterilised needle and applying protective dressing to affected areas
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