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A distraught mother-of-two is unable to cuddle or even hold her daughter’s hands because of an agonising condition that will make her break out in blisters.<\/p>\n
Rhiannon Atkinson, 30, was told her daughter, Pippa, now one, had the rare skin condition, epidermolysis bullosa (EB).\u00a0<\/p>\n
Around 90 per cent of Pippa’s hands and feet are without skin and red raw. The condition has started to spread across the rest of her small body.<\/p>\n
It causes the skin on her body to blister and tear at just the slightest touch – leaving the toddler, from Cwmbran, South Wales, in unbearable pain.<\/p>\n
Mrs Atkinson now has to restrain Pippa when she dresses her in bandages to stop her catching any deadly infections – which goes against her motherly ‘instinct’.\u00a0<\/p>\n
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Rhiannon Atkinson, 30, was told her daughter, Pippa, now one, had the rare skin condition, epidermolysis bullosa<\/p>\n
She said: ‘As soon as she was born her hands and feet looked as though someone had taken her and dipped her in boiling water.<\/p>\n
‘They were red raw and she was whisked off to intensive care.<\/p>\n
‘Being told your child has an incurable condition is incomprehensible, it broke my heart.<\/p>\n
‘But then not being able to touch her, or cuddle her for five months was torture.<\/p>\n
‘I’d never known anyone with this condition so it was a complete shock when we were told it was going to get worse.’<\/p>\n Plan of aftercare\u00a0<\/span><\/p>\n \n Mrs Atkinson stayed with Pippa and husband, Damian, 36, in hospital for 23 days as nurses decided to best plan of aftercare for their baby.<\/p>\n Once she was discharged from hospital, Pippa had to have her hands permanently bandaged for four months, and her feet bandaged for almost nine months.<\/p>\n Mrs Atkinson added: ‘When she was born I couldn’t hold her for five months, she was always on a pillow.<\/p>\n It causes the skin on her body to blister and tear at just the slightest touch – leaving the toddler, from Cwmbran, South Wales, in unbearable pain<\/p>\n Mrs Atkinson now has to restrain Pippa when she dresses her in bandages to stop her catching any deadly infections – which goes against her motherly ‘instinct’<\/p>\n Mrs Atkinson added: ‘Being told your child has an incurable condition is incomprehensible, it broke my heart’<\/p>\n Mrs Atkinson said: ‘As soon as she was born her hands and feet looked as though someone had taken her and dipped her in boiling water’<\/p>\n Mrs Atkinson stayed with Pippa and husband, Damian, 36, in hospital for 23 days as nurses decided the best plan of aftercare for their baby<\/p>\n ‘Not being able to cuddle your new-born baby is the worst feeling in the world but it would have caused her too much pain.<\/p>\n ‘When we would touch her, especially her hands and feet, she would scream out in pain and you could see the true agony on her face.’<\/p>\n Bandaged up each day\u00a0<\/span><\/p>\n In hospital, Mrs Atkinson had to bandage her daughter’s hands and feet four times each day. She was trained by specialist nurses.<\/p>\n She now knows how to bandage and clean Pippa’s skin thoroughly in the comfort of her own home to reduce her risk of infection.\u00a0\u00a0<\/p>\n Mrs Atkinson said: ‘She now has blisters on every inch of her body – on her eyelids, in her hair, her mouth and up her nose.<\/p>\n ‘So we have to clean the house at least 10 times a day, because if dirt gets into her blisters it can cause infection.<\/p>\n ‘Whenever she gets a blister me and Damian have to restrain her so that we can get the fluid out of her skin.<\/p>\n ‘That goes against every natural instinct in your body – having to hold your baby down and know that you’re hurting them.’<\/p>\n Once she was discharged from hospital, Pippa had to have her hands permanently bandaged for four months, and her feet bandaged for almost nine months<\/p>\n Mrs Atkinson, who gave up her banking job to care for Pippa, said: ‘She is now nearly 14 months old and hasn’t started to crawl or walk yet’<\/p>\n Epidermolysis bullosa (EB) is a general term used to describe a group of rare inherited skin disorders that cause the skin to become very fragile.<\/p>\n The skin is missing type VII collagen – a protein that usually binds the top layer of skin to the bottom layers.\u00a0<\/p>\n Any trauma or friction to the skin can cause painful blisters. In most cases, the symptoms of EB are obvious from birth.<\/p>\n It is caused by faulty genes inherited from one or both parents. There are many cases when both parents are carriers of the faulty gene without realizing it.<\/p>\n EB is rare – just one in every 50,000 children in the US has it, while it is believed that 5,000 people in the UK are sufferers.<\/p>\n There is no cure for EB so the treatment aims at preventing blisters becoming infected.\u00a0<\/p>\n Dr Emma Wedgeworth, consultant dermatologist and British Skin Foundation spokesperson, said: ‘EB is a group of genetic skin conditions characterised by excessively fragile skin which leads to easy blistering..<\/p>\n ‘It’s caused by an abnormalities in the building blocks of the skin, which means the skin is less able to withstand friction. Depending on the protein affected, EB varies enormously in severity.<\/p>\n ‘Some types are life-threatening whilst some types can be relatively mild- albeit very uncomfortable.’\u00a0<\/p>\n \n Alongside all of the maintenance that the family have to endure to keep Pippa safe, it is also a struggle to let her do simple day-to-day things.<\/p>\n Mrs Atkinson, who gave up her banking job to care for Pippa, said: ‘She is now nearly 14 months old and hasn’t started to crawl or walk yet.<\/p>\n ‘Because of her blisters the pressure on her knees or feet would cause too much pain.<\/p>\n ‘Every normal process takes ages too – it takes over 20 minutes to change her nappy because of all of her creams and lotions and 45 minutes to have a quick bath because we’ve got to get all of the scabs off of her.<\/p>\n ‘I have to change her clothes six times a day too, because her skin bleeds so easily.<\/p>\n ‘She wakes up at least four times every night screaming out in pain because she’s moved and hurt a blister or touched her skin in her sleep.’\u00a0<\/p>\n Her condition is slowly improving\u00a0<\/span><\/p>\n \n Despite Pippa’s condition covering her whole body, Mrs Atkinson has noticed that she is slowly getting better.<\/p>\n Mrs Atkinson, who is now trying to raise awareness of the condition, added: ‘Luckily, we can cuddle her every day now as her EB has slightly improved.<\/p>\n ‘Because Pippa’s condition is genetic, I’ll never have any more children just because of the risk.<\/p>\n ‘I wouldn’t change her for the world and we are doing everything in our power to ensure she leads a long and happy life.’\u00a0<\/p>\n \n Pippa’s family are now raising money to build a one-bedroom specialist extension to make looking after the toddler easier.<\/p>\n If you would like to donate towards Pippa’s cause you can do so via their Just Giving page<\/a>.\u00a0<\/p>\n","protected":false},"excerpt":{"rendered":" A distraught mother-of-two is unable to cuddle or even hold her daughter’s hands because of an agonising condition that will make her break out in blisters. Rhiannon Atkinson, 30, was told her daughter, Pippa, now one, had the rare skin condition, epidermolysis bullosa (EB).\u00a0 Around 90 per cent of Pippa’s hands and feet are without Read More<\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[],"tags":[],"class_list":["post-201435","post","type-post","status-publish","format-standard","hentry"],"_links":{"self":[{"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts\/201435","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/comments?post=201435"}],"version-history":[{"count":0,"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/posts\/201435\/revisions"}],"wp:attachment":[{"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/media?parent=201435"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/categories?post=201435"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/healthmedicinet.com\/i\/wp-json\/wp\/v2\/tags?post=201435"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}![](\"http:\/\/i.dailymail.co.uk\/i\/pix\/2017\/09\/22\/08\/4493993700000578-0-image-m-24_1506065994457.jpg\")
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<\/p>\nEPIDERMOLYSIS BULLOSA: EXPLAINED<\/h3>\n