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Tuesday, November 6, 2012

Eczema made my childhood a misery. I'm so devastated I've passed it on to my son

In it together: Suzanne Jones and her nine-year-old son Ben
In it together: Suzanne Jones and her nine-year-old son Ben

When Suzanne Johns gave birth to her daughter Melissa 12 years ago, she couldn’t wait to hold her and look at her for the first time.  But whenever Suzanne did hold her baby during those first few weeks, she couldn’t help checking for signs of eczema — the skin condition that had blighted her own life since childhood.


Suzanne, 41, who now has two children, recalls: ‘Throughout my pregnancies I was terrified I might have passed eczema on to my babies. When they were little I was constantly looking for dry, scaly skin. I desperately didn’t want them to live with the pain, discomfort and embarrassment I’d endured all my life.’ Suzanne — who lives in Yorkshire with her partner Colin, 39, her son Ben, nine, and Melissa — developed severe eczema when she was 14 and suffered until her late 20s.


It started on her elbows, hands and the backs of her knees — typical areas for sufferers. But the outbreaks became more severe and it spread to her face. She felt so self-conscious she didn’t want to leave the house. ‘I was horribly embarrassed by my red, inflamed skin,’ she says. ‘The eczema on my forehead was particularly bad. The skin was weeping.’

When Suzanne was 20, she was admitted to the Bradford Royal Infirmary for a fortnight. ‘My entire body was covered in red, raw sores,’ she says. ‘The itching was agony — I was even scratching in my sleep. My skin became infected and in the mornings I couldn’t take off my pyjamas because they were stuck to my weeping skin. When I went into hospital I was so relieved to have someone else take control.  I was bathed twice a day, and my skin was covered in a steroid cream then wrapped in bandages. The itching stopped and finally I could get some rest.’
 'He (Ben) developed it (eczema) when he was a couple of months old. I was devastated,' said Suzanne

'He (Ben) developed it (eczema) when he was a couple of months old. I was devastated,' said Suzanne

The treatment had broken the cycle of inflamed skin, scratching and more inflammation. Though Suzanne still has flare-ups, the eczema has never spiralled out of control again. But she was still anxious about her children inheriting it. Melissa, thankfully, appears not to have it, but Ben hasn’t been so fortunate. ‘He developed it when he was a couple of months old. I was devastated,’ says Suzanne. Ben’s eczema is particularly bad on his elbows and ears, and he has to rub several creams into his skin every day to protect it from infection and prevent cracking.

But Suzanne’s horrendous experience means she knows how to treat her son. Many patients, however, are not provided with information on treatment and are told they must simply tolerate it. This is despite the fact one in ten children and one in 20 adults have eczema — and it is on the rise.

A recent survey by the National Eczema Society found 48 per cent of parents felt they weren’t being supported by their GP. Suzanne says: ‘Some doctors are wonderful, but I have encountered attitudes of “There isn’t a cure, you’ll just have to live with it.” The survey also suggests that many parents do not appreciate how to treat the condition — with around half not realising their child needs to apply moisturising emollient creams as a preventative and not just during flare-ups. These creams should be applied twice a day, even when there are no symptoms. For some patients, medicated moisturisers that help reduce itching can also be prescribed.

Margaret Cox, chief executive of the National Eczema Society, says: ‘Moisturisers must be applied to the whole body twice a day, and are a powerful preventative to avoid eczema flaring. We have evidence that some eczema patients and the parents of children with it are not getting the advice and support they need to manage the condition effectively. It isn’t life-threatening, but it’s very distressing’.

Suzanne is fanatical about keeping her son’s skin hydrated. ‘I use lots of medical moisturiser. If his skin gets inflamed, I use a steroid cream,’ she says. ‘No nine-year-old boy would voluntarily moisturise his entire body twice a day, but that’s what I insist on. If he didn’t his skin would be a lot worse.’

Eczema is an inflammatory condition that makes the skin become dry, itchy, crusted and inflamed. The cause is unknown, but experts believe it is due to immune systems over-reacting. We all have bacteria on our skin and for most of us it remains harmless. But because eczema sufferers have an over-active system, the skin reacts to the bacteria and flares up, says Dr Sunil Chopra, consultant dermatologist at the London Dermatology Centre.

Other common triggers include dust, soap and pollen. Stress is thought to make it worse, and it’s thought genes may play a part. Recent research points to a gene called filaggrin. Dr Sara Brown, a consultant dermatologist and senior lecturer at the University of Dundee, says: ‘Filaggrin helps skin form a protective barrier against irritating substances — people with changes in this gene have a threefold higher chance of developing eczema.’ The incidence of eczema is growing. Dr Chopra says: ‘Twenty years ago, it was rare to see an adult with eczema, but I’m seeing at least one with severe eczema every day.’ This may be partly because our houses are warmer. Professor Rino Cerio, a consultant dermatologist at Barts Health NHS Trust in London, explains: ‘Central heating, double glazing and carpets all give rise to the tiny dust mites that can cause an allergic reaction in eczema sufferers.’
 Suzanne with her 12-year-old daughter Melissa and Ben. She hopes her son will grow out of eczema. His skin is improving as he grows older

Suzanne with her 12-year-old daughter Melissa and Ben. She hopes her son will grow out of eczema. His skin is improving as he grows older

Cleaner houses may also play a part by making some people’s immune system hyper-sensitive.  But because there are thousands of potential triggers, it can be impossible to pinpoint what each sufferer is reacting to. This may partly explain why advice to sufferers is so poor. Dr Chopra says: ‘GPs have only two weeks training in dermatology and that’s nowhere near enough. The NHS should be doing much more to provide specialist treatment. A patient with eczema should be seen by a dermatologist to get the best possible advice.’

Living with the incurable skin condition can cause depression — something that Suzanne knows  about. ‘There have been times when I couldn’t face getting up in the morning,’ she says. ‘I couldn’t bear another day of the painful itchy weeping skin. Her pregnancy with Melissa was the turning point. ‘My eczema improved hugely when I was expecting and it hasn’t ever got really bad again,’ she says. According to Dr Chopra, many women experience a calming of their eczema during pregnancy because their immune system is suppressed. However, Suzanne will never forget the agony of eczema. ‘The only thing that made me feel better was my mum. She would just hold me when it was really bad. ‘Now, I can’t quite shake the feeling of guilt that I’ve passed it on. 'When Ben was a baby his poor little face was so itchy he would rub it raw on his mattress. I felt really terrible.’  Suzanne hopes he will grow out of eczema. His skin is improving as he grows older — but there’s a stubborn patch on his arm that won’t budge. ‘For now, we have eczema together,’ says Suzanne. ‘We’re a team, and what’s good is that at least we know how to tackle it.’

 Source: Daily Mail UK 

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