Why are so many still suffering badly with eczema and what can be done?

Anyone living with eczema knows how many different areas of life it can affect.

The daily practicalities involve applying cream or ointments (which can come at a major cost) and keeping areas clean – but also dealing with the insufferable itch and skin shedding.

There’s also the mental health side of things, as many sufferers battle with self-esteem issues, as well as anxiety and depression. 

Eczema – often referred to as atopic dermatitis – also has a devastating impact on a sufferer’s family – whether it’s a mum caring for a child or a partner helping a loved one cope.

Dr Antony Bewley, a consultant dermatologist at Barts Health, had atopic dermatitis as a young person and explains in a little more detail how the condition can be devastating in so many ways.

He tells Metro.co.uk: ‘The itch is so awful that it’s impossible to ignore.

‘That’s frustrating for parents or loved ones as they want to say “well, if you stop scratching then you won’t cause the damage on your skin – it’ll have a chance to heal” – some of which is true – but what people don’t always understand is that atopic eczema is a genetic condition.

‘So you’re born with a likelihood of getting atopic eczema and at least 20% of children have atopic eczema at some stage. Usually, children will grow out of it but there is a portion of adults who go on to have atopic eczema in adult life and, in fact, it can come on during adult life, too.’

Dr Bewley also explains the psycho-social impact eczema can have on individuals. 

‘People feel like they have a licence to comment on your skin,’ he adds. ‘People often will make unsolicited comments.’

‘My sister had atopic dermatitis and she was called “panda” because she had dark eyes, or you could be called things like “pizza face,” or “scabby” or “leper” – so the social realities of living with atopic dermatitis are very real.’

This is something 49-year-old Ruth, who suffers with severe eczema, says can be incredibly difficult. 

She says: ‘People comment so much, it’s really hard – just this week I went to my art class, and five people spoke to me about the way I looked, in various different ways.

‘My skin is a situation at the moment and I think part of it is that people haven’t seen anyone looking like that.

‘They have sympathy and are curious – but at the same time, I’m going through hell and I really don’t want to talk about. I think there’s that disconnect, and people don’t think.

‘They don’t have any empathy, they don’t think “hmm that looks really painful, I won’t mention it” or “what could I do to help that person, that doesn’t just involve me satisfying my curiosity.”

‘You wouldn’t go up to someone in a wheelchair and say “but if you tried harder to walk, maybe if you tried harder” – and yet people say “have you looked at everything?”, “have you been to the doctor?” – it’s endless.’

Eczema is everywhere, so many people suffer, yet, because it’s not a killer disease, it doesn’t get the same attention.

Eczema is incredibly common and, according to Dr Bewley, it’s actually on the rise. 

So why are so many people still suffering so badly with the condition – particularly when it seems there are so many different treatments available?

Dr Bewley adds that it’s a lack of understanding, training and funding around the condition that can make things so difficult. Also, the fact that every person is completely different – as flare-ups can occur due to a whole host of factors.

He explains: ‘I think eczema is completely overlooked.

‘First of all most medical students have just two weeks of training in dermatology, and then in they become a GP about 25% of their consultations will be around skin – so we do need to address the imbalance in terms of training that medical students are exposed to.

‘Secondly, the psycho-social aspects of living with skin disease are sadly not given enough weight by a lot of healthcare professionals like dermatologists, doctors, nurses and pharmacists – and that really matters.

‘So I’m on a bit of a campaign to make sure that we put enough weight behind the experience of living with atopic dermatitis and understand that patients feel absolutely wretched.’

Dr Bewley stresses that the pandemic has also made matters worse for eczema sufferers – when they were already struggling before.

He continues: ‘Now, during the Covid pandemic, patients are finding it a real burden and hassle to get to see their GP and get an effective consultation.

‘Now I’m not knocking the GPs, they are inundated with lots of things at the moment. But sadly, these long-standing inflammatory conditions can be seen as less of an important priority – and that’s a mistake because, for who are living with eczema, it’s absolutely devastating and it’s not just the people who are living with eczema, it’s also the families around them.’

Lydia Finnegan has had skin problems all her life, but says her eczema journey started a few years ago when her stress levels increased.

She explains that her eczema ‘hit her like a ton of bricks’ as she had never suffered in that way before.

Lydia, who regularly writes about living with the condition on her blog, agrees that eczema needs to be seen as more of a priority – due to its far-reaching implications. 

‘Eczema is everywhere, so many people suffer, yet, because it is not a killer disease, it doesn’t get the same attention,’ she tells Metro.co.uk.

‘While it does not kill you, the suicide rates for eczema are very high, amongst other chronic illnesses, and it can be life-limiting because of how disabling it is. It would be amazing if more people could be listened to and more solutions were offered.

Suicide and eczema statistics:

  • According to a 2019 study, people with atopic dermatitis were approximately 44% more likely to harbour suicidal thoughts than those without the disease. Atopic Dermatitis was also seen to put patients at 36% higher risk for making a suicide attempt.

‘I suffered in silence for a long time before getting help. A 10-minute GP slot is not enough.

‘My skin spiralled and got much much worse but when I did seek help, I was very very well looked after. I saw a great dermatologist and we did allergy testing, blood tests, a skin biopsy and I saw a therapist and we tackled my skin holistically.’

This is something else championed by Dr Bewely.

He adds: ‘There is a misperception among healthcare professionals that if you start delving into holistic wellbeing that it takes a long time to help someone and it doesn’t. 

‘I work a lot in psycho-dermatology – the link between the psychology and the skin.

‘It is really important for us as healthcare professionals to allow the patient or individual explain what’s going on – in terms of their lifestyle.’

He adds that as well as prescribing ointments, creams and various therapies it’s important for healthcare professionals to understand the psychology behind the condition, too.

‘It’s making sure we see a person rather than a label and making sure we understand that looking after a patient with eczema means looking after them from their diet (from their skin’s perspective), to their psychological perspective,’ he adds.

Last year, a new eczema awareness campaign called #GOALS launched during National Eczema Week, and has been backed by the likes of Dr Bewley and Ruth. 

The aim of the initiative is to empower patients to feel more confident about discussing the condition with their doctors.

Ruth adds: ‘GPs and dermatologists don’t always ask about lifestyle, they don’t ask about emotional state or if those things are broken – like if you’re struggling with trauma and your lifestyle isn’t great, or if your living situation isn’t great and you’re depressed. If this is the case, then you probably are going to struggle with your skin. Some people need more help than others to address that. 

‘So I think that’s where the GOALS campaign comes in, the idea of sitting down and thinking about what you want to talk about and demanding that time with the doctor, as it’s really easy to come out and think you’ve just been told the same thing as before.

‘I think a lot of people feel lost, misunderstood and gaslit because eczema is just such a minefield and detective journey to piece together what’s going on. It’s made so much more complex because no one is the same. We all have different triggers.’

A lot of people feel misunderstood and gaslit because eczema is such a minefield and detective journey.

Dr Bewley also stresses that treating eczema is often a journey, rather than a quick-fix – and is usually a case of trial and error.

‘I think learning to live with eczema is not an instant experience, is does take time to understand your skin and what differences creams can make,’ he continues.

‘For example, we always advise patients not to wear wool clothes, because it’s a hooked fibre which will irritate the skin. It’s also about learning not to have such frequent showers and learning to use lots of moisturising cream.

‘For a lot of patients it’s a bit of a faff really, and they think “why is my skin doing this to me – I look after myself” – so there is a sense of frustration about the whole experience.’

What to know about topical steroid withdrawal (TSW):

Dr Ross Perry, a medical director of Cosmedics skin clinics, says: ‘Topical steroids have been an effective way of treating eczema for many years and is one of the most widely used drugs to treat the condition.

‘They are normally prescribed to patients when other treatments such as over the counter products haven’t worked.

‘Topical steroids are effective at reducing inflammation and irritation and can also be used to prevent future outbreaks.’

However, there’s also topical steroid withdrawal – which is when a person decides to come off it, after using it for a while.

Dr Ross continues: ‘Topical steroid withdrawal refers to a number of symptoms displayed in the days and weeks after someone has stopped using them. It can cause a severe rash, swelling, and other symptoms.

‘The duration of acute topical corticosteroid withdrawal and time to peak is variable from days to months, before eventually the skin becomes “normal.’”

‘It can take weeks to years to return to its original condition, however, very little research has been done to haver a better understanding as to why this happens

‘Therefore, depending on the severity of eczema, yes steroids may be recommended in the short term, however individuals may also look at changing their lifestyle habits and skincare. Avoiding perfumed products, looking into homeopathy, diet and other treatments such as phototherapy.’

Dr Bewley also says it’s important to go to a reliable source for help – as the amount of information out there can feel overwhelming.

He adds: ‘Make sure you go to reputable source for your information, like the National Eczema Society, and also go and see your GP as they should be able to understand and manage that.

‘Also prepare for your consultation with your GP, don’t allow yourself to be told, “in these Covid pandemic days, this is not a particular high priority” – insist that it is a high priority, and insist on getting an effective treatment and (where you can) take control as best as you can.’

For more information on the GOALS campaign visit: setmygoals.co.uk/atopic-dermatitis-eczema

Eczema resources:

National Eczema Society: eczema.org

Scratch That (a UK charity for Topical Steroid Withdrawal): scratchthat.org.uk

NHS: nhs.uk/conditions/atopic-eczema/

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