Allergy UK Interviews

Another big thank you, this time to Alison Parham for organising a number of interviews at Allergy UK and to all of the members I spoke to.

I was invited up to Sidcup, Kent to the Allergy UK offices where I spoke to CEO Jim Bennett, Deputy CEO Lindsey McManus and Fundraising Manager, Rebecca Carey.

We spoke about why the Allergy UK charity was set up and what it hopes to achieve, including training allergy nurses to take pressures off of GPs and give extra help and support to those suffering from allergies. We also discussed the increasing use of the Internet by patients to diagnose their various allergic conditions, as well the inspirational stories of those who have helped raised funds for the charity.

The interviews will be used throughout the multimedia project for both my written piece, which will address the increasing use of the Internet for self diagnosis and my main radio piece, which will explore the issues of steroid addiction and why it happens.

Hypnotherapy

Another big thank you, this time to Stephen Rigby, who met with me today to discuss his profession, hypnotherapy.

Stephen gave me a brilliant insight into hypnotherapy and it's use in helping those suffering from eczema, discussing in detail how it works and why it can be an effective form of treatment. I even got the chance to meet Bumble, Stephen's adorable and wonderfully inquisitive rabbit.

The interview with Stephen will be part of my online video which will be on the blog soon.

A TSW story

A big thank you to Louise Jones, the author of ‘Taming the Scratchy Monster’ and topicalsteroidwithdrawal blog, who met with me today to speak about her own experiences of steroid addiction.

Meeting at Walsall Art Gallery, we had a good chat about the eczema that led to Louise’s addiction, her experience of coming off steroid creams, her wonderful children’s book (which she wrote to help children understand TSW) and Louise’s hopes to continue raising awareness for TSW.

The interview will be part of my main radio piece, which will explore the use of steroid creams in treating TSW and will be on the blog soon. 

Allergy UK launch Stamp Out Damp campaign

When struggling to find the root to your eczema woes, or any allergy for that matter, perhaps one of the most frustrating responses a person can hear is that the cause is dust-mites. An answer that promptly leads to the question, what the heck can I do about that? And rightly so as the average bed will contain 100 000 – 10 million dust-mites so, aside from hoovering the bed before you sleep every night, there’s very little you can do to deter those pesky little critters, who are unfortunately just part of day to day life.

Well national charity, Allergy UK has now launched their campaign, Stamp Out Damp, in a bid to raise awareness for allergies that are provoked by house or mould in the home – conditions in which dust-mites thrive.

The campaign is part of Indoor Allergy Week (11^th – 17^th), during which the charity will be issuing advice on indoor allergies, as this time of year sees the highest levels of people suffering from allergies to mould.

Those already suffering from atopic eczema, asthma and rhinitis could have the most severe reactions to mould in the home and people living in damp conditions, such as those who are renting, are more at risk.

A recent Yougov survey showed 35% of renting families have a problem with damp in their homes and Allergy UK believe that the UK’s student population, living in older university housing could be at higher risk too.

Kirsty Ashman, 22, had to leave university after having 15 hospital admissions in two years due to allergic reactions.  She said, “My health has suffered so much due to indoor allergens and there is very little information out there about avoiding them. Last autumn and winter I spent 60 per cent of the time in hospital because of my allergies.”

Maureen Jenkins, Director of Clinical Services at Allergy UK, said, “The impact of mould in the home is all too often underestimated. For those suffering symptoms, it is important to visit your GP who can refer to an allergy specialist to gain an accurate diagnosis and see whether you are reacting to an indoor allergen.”

Reactions to mould spores, house dust mite excrement or pets are all indoor allergies and mould will also provide additional food for house dust mites. 

It's in our genes!

An international study led by Trinity College Dublin and the University of Dundee has shown a link between a mutated gene and atopic dermatitis – the most common form of eczema.

Funded by grants from the Wellcome Trust, Science Foundation Ireland and the National Children’s Research Centre, scientists have found a new gene mutation that leads to spontaneous atopic dermatitis in mice.

The mutation, found in the MATT/TMEM79 gene, causes the protein mattrin to malfunction.

The scientists went on to discover similar findings in the genes of humans with atopic dermatitis. In humans, mattrin is expressed in cells that maintain the skin’s function as a barrier.

Professor Irwin McLean is Scientific Director of the Centre for Dermatology and Genetic Medicine at the University of Dundee.

He said, "This study shows that disruption of the barrier function of the skin is a key driving force in the development of eczema. Without an intact skin barrier, foreign substances can enter the body and trigger inflammation and allergy."

The research involved collaboration from scientists in Ireland, the UK, USA, Singapore and Germany and it is hoped that it will help lead to further studies and cures for inflammatory skin conditions such as eczema. 

Step one of the eczema journey - exploring the statistics

In trying to set up this blog, I wanted to gather some statistics about eczema – in particular I wanted to know about how many people were affected by eczema.

Amazingly, I could only find two main UK statistics:

1 in 5 children suffer from eczema

1 in 10 adults suffer from eczema

Other than this, the only interesting information I could find on the topic of eczema was a BBC article, last updated in 2009, which stated that between 2001 and 2005 there was a 42% increase in the number of people who were diagnosed with the condition in the UK.

I also found some information stating that 35 million Americans suffer from the condition, 1-3% of adults and 10-20% of children. Another statistic I found interesting was that 60% of infants continue to have one or more symptoms in adulthood in the USA.

But what about the affect the eczema has on these people? What about the treatments they use? The treatments they find most effective?

None of these issues were raised in any of the statistics I could find.

And so I took finding answers into my own hands by releasing a survey, which 60 (and still counting!) brilliant eczema sufferers have given their time to complete.  

So far, here are the most interesting results of the survey:

-      75% of people find that their eczema keeps them up at night.

-     95% of people say that eczema makes them conscious about their appearance.

-        Perhaps surprisingly to some people who do not suffer from eczema, 83% of people who complete the survey believe that eczema has, at some point, had a direct affect on their ability to work or go to school.

These results show that eczema has a huge psychological effect on people’s lives. According to WebMD, lack of sleep can have serious negative side effects including a reduced memory and ability to learn, increased likelihood of having an accident due to reduced alertness, a lower libido and even an increased risk of high blood pressure, diabetes and heart attacks. It can also make people more susceptible to depression, as can feeling insecure about appearances; these two factors together could potentially be a dangerous mix of the consequences of eczema.

The effect eczema has on work and school is very rarely discussed, but a study backed by the National Eczema Society, has come up with similar results showing that 1 in 7 adult sufferers of eczema feel that it has stunted their career progression at some point.

-       Of all the treatments, steroid creams had been tried the most to control eczema with over 98% of sufferers having tried it.

-       68% of people find steroid creams useful in controlling their eczema, with 45% finding them the MOST useful way to control their eczema, however, 83% would rather not use steroid creams at all.

Steroid creams are often considered a controversial way of treating eczema. Some people have been worried about the use of steroids thinning the skin, but with more cases emerging, steroid addiction seems to be a growing concern. Many sufferers have taken to blogging their experiences of going through Topical Steroid Withdrawal (TSW) or Red Skin Syndrome (RSS), a term coined by American dermatologist Dr Marvin Rapaport. According to ITSAN, some of the symptoms of TSW are intense itching, red burning skin, shedding or flaking of skin, loss of appetite, eczema spreading over the body and insomnia.

However, steroids are supposed to be used sparingly and for short periods of time ONLY. To know what is meant by the term ‘sparingly’, the NHS has provided a fingertip unit guide i.e. how many fingertips of steroid cream should be used on different parts of the body at different ages.

-       On average, the 32% of people that spent over £46 a year on prescriptions, paid £218 treating their eczema

-       More than a third (38.33%) of eczema sufferers spent more than 8 hours a week visiting doctors and applying creams during a flare up

-       53% believe that their eczema controls them, opposed to 47% who believe they control their eczema

A majority of people who spent over £46 a year had an NHS pre-paid prescription card (which costs £104 a year). Others were sufferers from America, Australia and Canada, some of which spent $600 (around £370) yearly on prescriptions. The majority also spent over 8 hours a week during a flare up treating their eczema. To put that into perspective, that’s enough time to bake 12 cakes, have a full day of work, have full night of sleep, have 8 hour-long gym sessions, watch 16 sitcom episodes or, according to averages, 48 love-making sessions! Perhaps then it’s not surprising that a majority of those who completed the survey believe that their eczema controls them.

If you’re interested in completing the survey or seeing the questions you can find it here:

http://surveymonkey.com/s/PNM6MQY

Welcome

My name is Zoe Woodbridge and I’m a third year BA Multimedia Journalism (BAMMJ) student at Bournemouth University. 

Since I was a child I, like so many others, have been in a battle to heal my eczema - 20 years later and I’m sad to report that I’ve still had no success. 

This blog will be documenting my journey to find out more about eczema and the people who suffer from it  including the statistics, the treatments and the controversies behind them.