The eight stages of a flare-up: a few words on a face full of eczema

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1. Failure 

When my face reacts to something I’ve touched, something I’ve eaten or just something floating around in the air my first feeling is failure. My failure. I’ve let my guard down, I’ve forgotten to be vigilant. Or I haven’t been clever enough to identify the thing that has caused my skin to bubble and itch and burn today. What’s happened?, people ask. I don’t know, I never know.

2. Anger

Why today? Every day is a bad day for an inflamed face. Every day that I have a reaction I need to face the world, go to a meeting, present to a room full of people, go on camera, stand in a playground full of mums. So rarely do they happen on a day where I’m free to hide under the duvet.

3. Frustration

There’s nothing I can do now. The rot has set in. The bubbling and boiling is already underway, my system is attacking itself and the battle is in full swing. There is no cream or lotion that will bring this swiftly to an end.

4. Feeling overwhelmed

I feel like my brain is boiling. The intense itch and the popping of little hives all over my face is taking over every thought in my head. Every ounce of my will power is being diverted to not scratching the intense itch that is spreading over every inch of my face, even though I will inevitably give in and scrape my nails backwards and forwards across the burning itch. Which takes me back to failure.

5. Depression

It might only be brief, but my all consuming self interest has taken over. Nothing else matters, no-one else matters.

6. Acceptance

I try to calm my brain and hands while the equivalent of a wild bush fire is spreading across my face. I remind myself that it’s not my fault, that there is nothing to be ashamed of. I am clean and I have cared for myself as best I could. This is not my fault. It’s not my fault.

7. Courage

I have to face the world, I have no choice, there are other people to care about, there are things that need to get done. Besides which, hiding away means I’m more likely to scratch and become more self obsessed. More staring in the mirror, more self loathing, more missing out. I go out to work, pick the children up from school. I talk to people, laugh, forget about my skin for a few seconds at a time.

8. Coping

A few seconds become minutes and I find I can cope. I feel the eczema and do it anyway. My mood is lifted by beating the obsession, going about normal daily business – in spite of the wild fire – and I kick this burning skin to the back of my mind.

Until the next time.

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Eczema, the tabloids and me

I’ve noticed something lately. Eczema has slowly and creepingly become regular fodder for the tabloids. They appear to love nothing better than to reel off stories of how something as simple as household porridge oats have ‘cured’ someone’s otherwise stubborn and angry eczema (accompanied by equally sensational pictures of horrific looking skin) or how someone’s child screamed the house down and ripped themselves raw before finding a miracle new cream.

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When in fact, as most of us know, the boring truth of the route to good skin is careful daily management with the occasional and timely application of prescription creams from the GP. And sadly there is no cure. Well, not yet (I’m always hoping).

Which is why I was so surprised that, when I spoke to a tabloid journalist – banging my skin-mind drum and soapboxing about body confidence and self-esteem issues, that I was represented fairly, the condition was treated with respect and some very sensible advice was offered – without resorting to sensational miracle cures.

Read the article online here.

The whole thing came about when I was approached by the British Skin Foundation (a charitable organisation which does amazing work for people with skin conditions in the UK) to become a media case study. I have written so much about the lack of real pictures of real people with eczema in the media, that I decided to put my money where my mouth was and throw my hat into the ring.

Mirror journalist, Rosie Hopegood, called me up one afternoon and we had a jolly nice chat about eczema and how I have managed it over the years – she even allowed me to waffle on about the importance of addressing the psychological issues attached to skin conditions (for probably a *little* too long). We said our farewells and I thought little about it.

The only moment I felt slightly uncomfortable was when she asked whether my eczema had ever affected my personal relationships, I dodged it quickly and evasively – in truth it has affected them a great deal – especially when I suffered from eczema all over my body (it’s confined mostly to my face these days) – but I was surprised by how panicked the question made me feel. That aside though, and in spite of nestling next to a headline on the cover which profiled a story about how an animal ate a girl’s nose (!), the results of the interview and the contents of the article were really quite encouraging.

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The article focused on the need to break the itch/scratch/itch cycle – which, as everyone who has eczema knows, would be the key to a lifetime of eczema happiness IF ONLY IT WERE POSSIBLE!

It offered general nutritional advice, explained what eczema is, accurately and sensitively, and even printed two pictures of eczema skin, neither of which were sensational – just honest to goodness eczema.

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Only one slightly melodramatic quote ‘I’ve taught myself to smile through the pain’ (cringe) – while of course I do try and put my best foot forward – if it really does hurt, I’m afraid I’m frowning with the rest of you!

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But in fact, Rosie summarised the whole of my eczema blog so succinctly and pretty accurately into this tiny little box – in this newspaper which I haven’t read since I used to visit my long gone Grandparents decades ago in a small East Midlands industrial town – that I think I’ll get me coat…

Well done the Sunday People!

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Feeling hopeful: Kefir for Eczema Diary Week Two

After hearing Shann Jones of the Chuckling Goat, a farm in Wales offering goat products that claim to help with eczema and allergies (read all about it here), on the radio talking persuasively about the benefits of kefir (a probiotic drink made from raw goat’s milk) I decided to take the plunge and order their 21-day course.

In a nutshell here is the theory behind kefir for eczema. If you suffer from eczema – a condition that has recently been added to the list of autoimmune diseases – it’s likely that your gut needs replenishing with some good bacteria which, according to Chuckling Goat, can help prevent your immune system from turning on itself and attacking healthy tissue – think Raquel Welch in the Fantastic Voyage. Read more here.

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There is currently a 4 week-long waiting list for their course of Kefir following all the media interest, but I must have got in there just before the rush as my box of bottles arrived in good time, beautifully packaged and insulated with a cold pack so they were perfectly chilled during an unseasonable period of very hot weather. I transferred them straight to the fridge and got quite excited about unleashing all these little bacteria warriors into my gut.

Chuckling Goat recommend that you keep a diary as you work through the course of probiotics to gain an understanding of how it’s all working, and I’m told if your gut’s in pretty bad shape you can expect a tough first few days – so here goes:

Read Week One here

Day 6-8

After hitting rock-bottom at the beginning of the first week of taking the 21 day course of kefir for eczema I am happy to report that I am feeling much perkier. My skin has calmed down, it’s gone from the burning and itching to the drying and cracking stage, sounds bad but is in fact much more manageable. I’m feeling more energised with no headache or stomach complaints. I’m not feeling entirely on top of things but so SO much better than at day 4! I have been sleeping extremely well and I’m waking feeling, not exactly refreshed, but well rested.

Days 9-11

So, two bottles down four to go. Sun is shining today and when I took the dog for a walk – I didn’t have to drag my leaden limbs across the fields like I did on day 4. I have even been looking forward to my little glass of fizzy magic each morning. But my skin is still pretty awful – dry, irritated and itchy – so, I have given in and have applied my prescription cream to my face, (I was planning on avoiding it to give the kefir a real run for its money but I just couldn’t take it any longer!).

Days 12–15

Once the prescription cream had worked its magic I started to feel a lot better. My skin is improving – comfortable and supple, but I can’t say I’m feeling much improved from when I first started the course of kefir. And I can tell my skin is on the edge its seat just waiting to spring into life and react to all those menacing spring pollens floating about in the air. I’m keeping it in check, I think, with all my creams and potions but I can’t see any major change.

Days 16-18

I always have a few zits knocking around on my face, probably because of all the creams I have to slather on – clogging my pores. It’s a choice sometimes – shall I have eczema or acne today? Mostly I choose acne, because the eczema is so damned uncomfortable and the acne I can cover up if necessary – there’s no hiding the porridge face. But, now, this may be my imagination but I think the spots are slightly less angry and deeply embedded. They usually feel like the tip of an iceburg – what the rest of the world sees is nothing compared to the massive volcano like structure sitting just beneath the surface of my skin. Since the kefir, they are here today, gone tomorrow as opposed to before when they would be here today, much worse tomorrow and positively Vesuvial the day after!

My skin is starting to feel much more supple and elastic and I am sleeping the sleep of the dead – in a good way. I have one bottle left and am really hoping this is the start of something good.

Day 18

Suddenly, my skin feels amazing. It’s days since I have put any prescription cream on my face and my skin feels supple, elastic with not a hint of irritation. It does look a bit blotchy and I have a few surface spots, but I actually really don’t care how it looks because it rarely feels this good. I can do anything, smile, yawn, frown and nothing hurts. I have been through patches like this before, so who knows if it’s the kefir – but with three days left, I’ll keep on trucking and let you know.

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Is eczema an election issue? NHS privatisation and the British dermatology crisis

A week before the country goes to the polls, dermatology provision in the UK is teetering on the brink of a major crisis. A report issued this week from an independent health think tank reveals the desperate lack of training for GPs in skin conditions and their treatment. But the most alarming news comes in the shape of the dismantling of existing dermatological services and the resulting ‘mass exodus’ of NHS dermatology consultants in its wake, leaving eczema patients with nowhere to go.

If you suffer from eczema or other skin conditions you will already know how woeful and under resourced the level dermatology care that your local GP is able to provide. Which is desperately ironic as skin issues make up a massive percentage of visits to GPs, in fact 24% of the population will make a visit to their GP each year with a skin complaint.

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24% of the population will visit their GP each year with a skin condition yet GPs receive just six days dermatology training

A report on the state of the country’s dermatology provision from health think tank, the Kings Fund this week lays the facts bare. “GP dermatology teaching averages approximately only six days and most GP training schemes have no dermatology attachment,” says the report. “Dermatology undergraduate training averages a couple of weeks at most, is variable in terms of quality as well as syllabus, and it is not compulsory.”

And for the 13 million GP consultations for skin conditions each year there are just 650 skin specialists across the whole of the country to advise GPs and provide specialist care.

The psychological affects of skin conditions have been highlighted again and again, from cross-party reports from MPs to actions groups such as Changing Faces, yet these needs remain tragically unmet by GPs who are poorly equipped to meet the needs of their patients due to the low priority of skin disease and its impact on quality of life in medical training.

But most worrying of all, as people with skin issues are predominantly treated as outpatients, dermatology provision – even in its specialist capacity – has been extremely vulnerable to quiet and swift privatisation. Dr. David Eedy, President of the British Association of Dermatologists (BAD) believes that dermatology has been seen as an easy service for NHS commissioners to shift ‘into the community’ due to a widely held but mistaken view that skin diseases are minor ailments and can be easily identified and treated locally, reducing the burden on hospitals.

“The drive to shift treatment into the community leads to decommissioning of Dermatology hospital services,” says Dr Eedy. “Another concern is the practice of ‘cherry-picking’ by private healthcare providers who are more likely to take on relatively easy, high volume, lucrative work in the interests of profit. The upshot of this is that the local NHS hospital department is left to pick up the more difficult and expensive work while saddled with increased financial pressures.”

Dr Eedy goes on to explain that there have even been cases of independent providers tendering for dermatology services without even having dermatologists or other appropriately trained staff in post. This could be explained by the commercial confidentiality clauses that can, according to Dr Eedy, “stifle transparency,” when private companies are involved in bidding to provide healthcare services. “This makes it hard for external bodies to scrutinize whether the new service is compliant with national guidelines,” he says.

One particular case very close to my heart is the closure of the acute dermatological services at Nottingham University Hospital (NUH) Trust earlier this year. Long upheld as a centre of excellence in dermatology – and in fact my first ever visit to a sympathetic specialist dermatologist when I was in my teens. The reason for the closure? Six of its eight consultants walked out after refusing to work for a private subcontractor, which had been awarded the contract to provide the majority of local dermatology services in the area.

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Nottingham University Hospital, which closed its acute adult dermatology service earlier this year

But the news gets worse. The subcontractor awarded the contract was Circle, you may remember the private health care company from the news earlier this year. Circle became the first private company to run an NHS hospital when it took operational control of Hinchingbrooke Health Care NHS Trust in February 2012.

In January 2015, Circle announced its intension to withdraw from the contract, just three years into the 10-year agreement, following a damning review of its services from a health care quality watchdog, leaving the taxpayer to pick up a massive bill for its lack of understanding of the actual costs of running a hospital.

“We expressed concerns that Circle’s bid to run Hinchingbrooke had not been properly risk assessed and was based on overly optimistic and unachievable savings projections,” said Margaret Hodge speaking at a parliamentary committee reporting on Circle’s failure to deliver.

Private health care provider, Circle - famous for its failure to run Hinchingbrooke Hospital, has taken over dermatology service in Nottingham.

Private health care provider, Circle – famous for its failure to run Hinchingbrooke Hospital, has taken over dermatology service in Nottingham.

It has been reported that the senior dermatology consultants at Nottingham refused to join the private contractor largely due to lack of opportunities for proper academic research and training under Circle’s management.

“Nobody has thought through the implications for teaching, training and research – the whole future of British dermatology,” said Dr Eedy commenting on the closure of NUH’s dermatology services. “Nottingham is just one example of the many fires we are fighting across the UK to try to keep dermatology services open in the face of poorly thought-out commissioning decisions and the Government’s lack of understanding of the implications of pushing NHS services into unsustainable models provided by commercially driven private providers or enterprises.”

Labour’s shadow Health Secretary, Andy Burnham believes that the Nottingham dermatology crisis has revealed that the true ‘ideological intent’ of the Government’s NHS plans is becoming clearer by the day. “They ploughed on with this privatisation even though doctors said they would leave,” he said. “It shows competition lawyers, not consultants, calling the shots in the Coalition NHS. Labour will scrap the competition culture and put the right values at the heart of the NHS.”

While NHS dermatology provision is far from adequate, if academic research and training provision is at greater risk under private management and rare centres of excellence are closing their doors – privatisation of dermatology, its lack of accountability and questionable track record in proper financial management could be the final nail in the coffin for the kind of improvements that are desperately required for patients with skin conditions in urgent need of better specialist care.

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Goats milk kefir probiotic for eczema and allergies: A Fantastic Voyage

Picture Raquel Welch in a skintight diving suit being attacked by evil green slimy antibodies in the classic 1960s sci-fi movie, Fantastic Voyage and you’ve pretty much got the latest major breakthrough in eczema and allergy research.

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In January this year researchers in the US added atopic dermatitis (aka eczema) to the growing list of autoimmune diseases. Automimmune diseases develop when your immune system decides that some of your healthy cells are foreign and launch a deadly attack – among the diseases already included on the list are Multiple Sclerosis, arthritis and irritable bowel syndrome.

The discovery was made in the US during research into a new drug called dupilumab, a ‘monoclonal antibody’ which, according to a report in the Journal of Allergy and Clinical Immunology , “can reverse the immune response that causes atopic dermatitis skin lesions.”

Dupilumab acts to turn off the responses of two very specific proteins that are responsible for the immune system turning on itself causing flare-ups of eczema.

Great news, but this stuff is likely to take a number of years to get through trials and turn up on your GP’s radar so what can we do with this information right now?

Shann Jones director of The Chuckling Goat, believes that goats milk kefir, an Eastern European probiotic drink, can help to alter the response of the immune system and reduce allergic inflammation.

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“Kefir modulates the immune system,” says the Chuckling Goat website. “Certain compounds in kefir may play a role in regulating immune function, allergic response, and inflammation. One study found that kefiran, a sugar by product of the kefir culture, may reduce allergic inflammation by suppressing mast cell degranulation and cytokine production. Another study found that certain bacteria in the kefir culture inhibited IgE production, helping to moderate the body’s allergic response.”

The Chuckling Goat offers a 21-day course of their probiotic goat’s milk kefir with the claim that it will permanently repopulate your gut with the good bacteria that effectively helps the immune system work out who are the goodies and baddies when it comes to fighting off infections and foreign bodies.

I heard Shann being interviewed on the radio a few weeks back and was persuaded to give the kefir a whirl – could this really be a natural, drug-free alternative to dealing with the evil antibodies who have simply chosen to fight for the wrong side?

My bottles arrived this week (beautifully packaged and nicely chilled). So, I’ve zipped up my jumpsuit and I’m diving in. As recommended by the Chuckling Goat, I’m keeping a diary of how I feel as the days go by and I’ll share my fantastic voyage with you as I progress through the course. Wish me luck!

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Queasy and cheesy: Kefir for Eczema Diary Week One

After hearing Shann Jones of the Chuckling Goat, a farm in Wales offering goat products that claim to help with eczema and allergies (read all about it here), on the radio talking persuasively about the benefits of kefir (a probiotic drink made from raw goat’s milk) I decided to take the plunge and order their 21-day course.

In a nutshell here is the theory behind kefir for eczema. If you suffer from eczema – a condition that has recently been added to the list of autoimmune diseases – it’s likely that your gut needs replenishing with some good bacteria which, according to Chuckling Goat, can help prevent your immune system from turning on itself and attacking healthy tissue – think Raquel Welch in the Fantastic Voyage. Read more here.

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There is currently a 4 week-long waiting list for their course of Kefir following all the media interest, but I must have got in there just before the rush as my box of bottles arrived last week, beautifully packaged and insulated with a cold pack so they were perfectly chilled during an unseasonable period of very hot weather. I transferred them straight to the fridge and got quite excited about unleashing all these little bacteria warriors into my gut.

Chuckling Goat recommend that you keep a diary as you work through the course of probiotics to gain an understanding of how it’s all working, and I’m told if your gut’s in pretty bad shape you can expect a tough first few days – so here goes:

Day One

Woke up very excited to get started. As instructed, I poured myself out one third of a pint into a glass, looked at it, had a sniff and suddenly didn’t feel so excited any longer. The words Shann used to describe the kefir on the radio echoed around my head, “it tastes NASTY, I’ve got to tell you, it’s horrible stuff.” So, I held my nose and went for it – and, in fact, it wasn’t nearly as bad as I was expecting. It tastes like slightly sour, fizzy, natural yoghurt but obviously thinner and drinkable.

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Chuckling Goat also recommend using their moisturising cream alongside the 21-day course of kefir, but sadly it contains hazelnut oil which I’m allergic to, so that was out for me. I have read in other studies that applying the probiotic directly to the skin can have benefits – so this might sound completely disgusting but I just poured the remaining drops out of the glass and slapped them onto my face. Later on that day I did feel a little bit queasy (and possibly so did everyone else with me wandering around smelling nicely cheesy!) but that was about it for day one.

Day Two/Three

My husband woke me up on day two and day three by bringing me a freshly brewed coffee in bed – ah, bliss – but, just before I took my first sip I remembered I had to go downstairs and drink a third of a pint of fizzy yoghurt. So off I trundled and again, it really wasn’t that bad. In fact I think I’m starting to like this little fizzy and sour wake-up call.

As for the state of my health, things were starting to take a turn for the worse. I was starting to feel slightly headachey and the skin on my face was feeling puffy and very itchy, the first signs of an eczema flare-up. Although this is not uncommon – I often have these reactions on my face – I have been having a really good run lately, my skin has been behaving itself and has been clear for a couple of weeks now. But I could tell that something was irritating me.

Day Four

Today was a bad day. I felt completely exhausted and in a very low mood. I had a crushing headache. The skin on my face was horrible and the allergic reaction was getting worse, I had hives on my eyelids and my skin was sore and incredibly itchy. I felt like I just wanted to sleep all the time.

Hoping for a better day tomorrow.

Day Five

Feeling a little brighter today. The headache has gone and I’m feeling more positive with a bit more energy. The skin on my face is calming down a little, but is still sore and itchy. Still feeling tired but hoping for a good night’s sleep.

With any luck, that’s the beginning of the end of a tough battle inside my gut and I can start reaping the benefits of furnishing my insides with these good bacteria.

Watch this space for the next five days.

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Your eczema might be costing you more than you think

How many times have you hidden away from the world when the eczema on your face is at its worst? How many invitations have you turned down, how many excuses have you made for turning over and rolling the duvet around your head in the morning? Too many to count I’m guessing. Well – you’re not alone.

Anyone with a face full of red, inflamed, dry and itchy skin knows how hard it is to show up to anything. Besides which you can’t quite believe that people won’t be able to see that the way your skin feels is dominating every thought in your head, that every bit of will power you possess is telling your hands and every urge in your body not to scratch and tear at your face – to make it stop! But I imagine it’s mostly because your face looks different. Maybe a bit like this?:

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It definitely doesn’t look like the pictures in the magazines of women with flawless skin and immaculately made-up faces (and neither do theirs, but that’s another story!). Some days, rolling over and giving in is all you can do. But, according to the report Costing the Invisible from the Centre for Appearance Research and AnyBody, low body confidence is having a profound effect on the aspirations of women throughout their education and in the workplace.

Researchers interviewed almost 50,000 women between the ages of 10-60 across five continents and have found that adolescent girls are not engaging in classroom debate and are missing school due to concerns about the way they look. For example, 20% of girls don’t give an opinion in class and 16% don’t go to school when they feel bad about their looks.

Many adult women are not turning up to work or job interviews due to body image concerns.

And for women with skin conditions there are even greater issues to contend with. Changing Faces, which supports people with disfigurements and campaigns for ‘face equality’ and better quality of life for patients, revealed in their report Look at Me, last year that the psychological and mental health issues attached to skin conditions are on the increase.

“There is huge stigma attached to skin disease,” said James Partridge, the charity’s chief executive. “Conditions are often wrongly assumed to be contagious or associated with bad hygiene, and the visibility of skin conditions mean that people have to deal with the double whammy of the reaction of others as well as the physical symptoms such as itching and pain.”

Don’t I know it – when I went out looking like this, a lady in the supermarket asked me if I’d tried moisturising and, “is it catching?” – and it wasn’t even all that bad.

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The famous author of Fat is a Feminist Issue, Susie Orbach says that, while the impact of body image concerns on physicalFIFIbook_bf16 and psychological health is well documented, what is new in this report is the growing evidence on the academic, social and occupational consequences of this concern. In short body image concerns are holding girls and women back from realising their full potential and aspirations. Does that sound like you?

“What emerges from this report is devastating,” says Susie Orbach. “Young girls and women’s appearance concerns are hampering their economic and intellectual capacities. Yes they succeed. Yes they are doing well in school but they could be doing better. Their efforts are undermined by an ever vigilant inner eye that diminishes their contribution because of their view of how they look. This has nothing to do with how they do look but entirely to do with how girls and women are seeing themselves as less than adequate and in need of perfecting as though the beauty culture is the way to a sustainable life.

The assault on appearance must stop before it robs more girls and women and increasingly boys and men from expressing themselves as ably as they might. The imperative to look good as the rich industries which feed the beauty culture suggest is not a solution but a prescription for dissatisfaction.”

I’m not denying that it’s fun to play around with make-up and make the best of your features when your skin allows you to wear it, I’m always on the search for products that I can play with and not make my skin erupt. I’m sure there are plenty of men who are seriously envious that its not 100% mainstream for them to transform their faces into something different either for fun or to hide some stuff they’d rather not make public for whatever reason. But it’s when it is deemed necessary, when it becomes a normal way of life to never leave the house without a face contoured and painted like Kim Kardashian that it becomes a worry. And for eczema sufferers there is just no choice but to face the world with only the eczema doing the highlighting and contouring for us!

Have a think about this the next time you wake up with a massive flare-up all over your face. Will you choose to turn your back on that devastating inner eye and fight for your right to fulfil your potential? It is possible to halt this personal assault on your appearance because ultimately it’s you who is making the attack – granted, it’s based on the assumptions and a society full of people judging women based on their appearance – but you have a choice. Will you let it cost you as dearly as it has all of these women in the study? Take a long hard look at the invisible costs to the way you choose to let your eczema change the way you live your life today.  Let’s make Eczema a Feminist Issue.

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Same face – inner eye banished!

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