PSORIASIS. Challenging the traditional view of psoriasis 29 OCTOBER 2008 AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT PSORIASIS

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1 29 OCTOBER 2008 Challenging the traditional view of psoriasis AN INDEPENDENT SUPPLEMENT FROM MEDIAPLANET ABOUT

2 2 AN ADVERTISING INSERT BY MEDIAPLANET Introduction CONTENTS Bare basics 4 Challenges for children 6 Fame and psoriasis by the actor John Thomson 6-7 Types of psoriasis 7 Panel of experts 8-9 Co-morbidities and genetics 10 Research and discoveries 11 Connect and relax Role of primary care 14 Treatments 15 A TITLE FROM MEDIAPLANET Project Manager: Kerren Triffon Editor: Nick Lewis Production Manager: Katherine Woodley Design: Sherine Barnes Prepress: Jez MacBean Print: News International Mediaplanet is the leading European publisher in providing high quality and in-depth analysis on topical industry and market issues, in print, online and broadcast. For more information about supplements in the daily press, please contact Kerren Triffon Tel: kerren.triffon@mediaplanet.com Time to act say two at the top Lars Ettarp President of the International Federation of Psoriasis Associations, writes: You may not die from psoriasis but its co morbidities can be fatal. When I got psoriasis many years ago it was known as one of the most severe and stigmatising skin diseases. During the past ten to 15 years, the picture has changed completely, even if the stigma remains as a huge problem. Today we know that psoriasis is a systemic disease involving the immune system and that the inability to control immunological pathways results in disease pathology. Psoriasis can severely affect the sufferer s quality of life and lead to substantial physical and psychological impairment. In adults, severe psoriasis is associated with the metabolic syndrome entailing a risk for type-2 diabetes, obesity and cardiovascular disease. The first study to show an increased risk of cardiovascular diseases and mortality was published in Sweden 2005, and has been followed by a number of other studies. The new findings have also changed the panorama of the national psoriasis patient s organisations and our cooperation within the International Federation of Psoriasis Associations (IFPA). It is not an easy task to inform all our members and have them accept the new facts, both the medical consequences and the importance of lifestyle factors. At a national level we have a duty to tell the general public and the Government, public authorities and health officials that psoriasis is a disease that deserves the highest attention. That includes doctors, nurses and other health alliances, because the new findings are not widely known in the medical world, even in highly developed countries. Every year, all national psoriasis associations celebrate World Psoriasis Day. This year, on October 29, IFPA members are going to focus on two things. Firstly, we will approach our governments and inform them about the severity of psoriasis and how it generates huge direct or indirect costs for society, especially if sufferers are not provided with the best treatment and modern medicine to keep the inflammatory processes under control. Secondly, we will rally national governments to have the World Health Organisation (WHO) include psoriasis in its Strategy for Prevention and Control of Non-communicable Diseases. I also hope you, dear reader, will join us in this fight for a better life for the 125 million people around the world suffering from psoriasis. And I encourage you to help psoriasis patients receive better care by completing and sending in the petition found on the last page of this supplement. The Rt. Hon Bruce George MP is Chair of the the All-Party Parliamentary Group on Skin, writes: I m delighted that this supplement is being published on World Psoriasis Day as it will help to raise the profile of psoriasis and create better understanding of the condition. There are some 4,000 recognised skin diseases and psoriasis is one of the most common. It has a number of different forms - mine is psoriasis vulgaris, which I first developed while taking my final exams at university. Whereas skin cancer has attracted enormous publicity as the number of malignant melanoma cases has increased by a fifth in the past two decades, the profile and understanding of psoriasis remains limited. I was once interviewed for a pharmaceutical survey and asked what illnesses, if any, I suffered from. I replied - though at that time it must have been fairly obvious - that I had psoriasis. A look of horror appeared on the interviewer s face and she exclaimed sympathetically: Oh, I m so sorry, didn t Errol Flynn die of that? No, I said, I think he died of cirrhosis, and that s very different from psoriasis! The All-Party Parliamentary Group (APPG) on Skin was established in 1993 and works closely with patient groups (such as the Psoriasis Association and the Skin Care Campaign) and health professionals including consultants, GPs, nurses and pharmacists. It aims to raise the political profile of, and understanding about, all skin conditions. It was set up because legislators were persuaded that there was a need to raise awareness of skin issues in Parliament and Government. In particular, it was hoped the group could help to focus the work of health officials in providing better dermatological care. The APPG s reports cumulatively include hundreds of recommendations. The words more and better recur: more dermatologists, better training, more equitable distribution of services, more research, better patient involvement... Our recent commissioning report argues for improved planning and provision of services for people with skin conditions and we d like to see this become the reality. I hope that this special supplement will go some way towards helping to redress the balance. Merck Serono has reviewed the articles, however, all editorial control remained with the author and publishers. IN ASSOCIATION WITH

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4 4 AN ADVERTISING INSERT BY MEDIAPLANET Bare basics A short history of psoriasis We are wrapped in living, breathing skin and yet since time began we ve neglected huge swathes of it. The skin has the largest surface area of all the organs of the human body. The average adult human has a skin surface area of between 1.5 and 2 square metres, most of which is between 2 and 3mm thick and holds sweat glands, blood vessels, skin cells, and thousands of nerve endings. Since aborigines discovered teatree oil man has been seeking to address his skin problems. In India, the sacred book of Atharva Veda named healing plants such as neen and vidana to cure skin diseases, and evidence has been unearthed at the site of Babylon of soap-like cakes from 2,800BC, used to calm the skin. In ancient mythology, psoriasis sufferers were known as those who look like snakes and were thought to be lepers and unclean, a stigma that sadly still lingers today in some parts of the world. Other topical remedies ranged from cat faeces and urine to semen and a soup made from snakes. Rationalisation of sorts began in the 5th Century BC, when the Greek father of medicine Hippocrates mentioned yellow sulfide of arsenic in his writings as one ingredient in a paste for skin ulcers. By the 2nd Century AD, the Roman physician Galen had built on this knowledge and used the term psoriasis vulgaris to describe a skin affliction. Taking a big leap through the Dark Ages and the Renaissance, the Enlightenment encouraged research into the scientific process and London, Venice and Paris became important centres of dermatology. By the late 18th century the English dermatologists Robert Willan and Thomas Bateman differentiated psoriasis from other skin diseases. Willan identified two categories: leprosa Graecorum when the skin was predominantly scaly, and psora leprosa for the more eruptive condition. His book, On Cutaneous Disease, published in 1798, contained the first clinical colour plates of psoriasis. In 1841 the Viennese dermatologist Ferdinand von Hebra endorsed Galen s use of the term psoriasis, giving the skin disease its current name. It came from the Greek psora which means to itch. Von Hebra improved on Willan s system of classification by relating clinical disease to pathological anatomy. Need to know: the bare basics Psoriasis is a common skin disorder. It is not contagious and does not scar the skin. It can occur anywhere on the body, normally on the scalp, elbows and knees, and most people are only affected in a few small areas. But outbreaks can range from being mild, with one or two patches, to severe outbreaks which cover large areas of skin. Treatments used arsenic right up until the 1950s when tablets still contained one-eighth grain of arsenic trioxide. Ammoniated mercury was used as a topical treatment in conjunction with baths and other remedies but is rarely used today because of its high toxicity. The same is true for Folic Acid Antagonists, which were still being used as late as the 1970s before being replaced by its metabolite, methotrexate. Like arsenic, coal tars have been used since Hippocrates time and became increasingly popular as a topical treatment from the mid-19th century onwards. The slogan the heartbreak of psoriasis originated in the advertising campaign for Tegrin, which was a coal-tar based ointment. In 1921, William Goe- Promotional feature ckerman began the use of coal tar in a hospital based regimen with phototherapy, at the Mayo Clinic in Rochester, Minnesota. Goa powder or Chrysarobin was a Chinese remedy mixed with water, lime juice or vinegar that was spread on the skin. During World War One when Goa powder was difficult to obtain, Bayer synthesised a substitute called dithranol in Europe or anthralin in the US. Patients would be wrapped in a dressing for up to 24 hours. Standing on the shoulders of the ancients and the medical pioneers of the past two centuries, there has been considerable progress in the range of treatments available to combat psoriasis in the 21st century. For more details see our treatment guide on page 15. What is World Psoriasis Day? A global consortium of patient associations from all over the world have come together and today (October 29) it celebrate the fifth annual World Psoriasis Day (WPD), an event designed to raise awareness globally about psoriasis and psoriatic arthritis. Normal skin renews itself every days. In psoriasis sufferers, this is speeded up so that skin cells are replaced every two to six days, causing the cells to build up quickly on the surface of the skin, forming patches or plaques. This acceleration is caused by certain immune cells (T-cells) which become overactive. Research is only starting now to understand what causes the immune system to behave this way. Patches are usually red and flaky with silvery scales. These patches have defined edges which make them conspicuous from the rest of the skin. They can range in diameter from a few millimetres to several centimetres. In more sensitive areas of the body, such as the armpits and the genitals, there may not be scaling but areas can be red and shiny. These patches may be itchy and painful. Those with less severe symptoms may just find the disorder irritating. However, for many there are deeper psychological issues, with sufferers dealing with low selfesteem and depression due to the appearance of, and public ignorance about psoriasis. Symptoms of psoriasis can appear at any age, but most frequently between the ages of 11 and 45, often starting at puberty. It affects equal numbers of men and women. The condition is hereditary with several genes having been identified so far as linked to psoriasis. Around 30 per cent of people with psoriasis have a family history of it. However, someone may inherit the genetic combination but never suffer from psoriasis. Even when it is inherited, psoriasis is normally triggered by an external event, such as a throat infection, stress, certain medications or an injury to the skin. Psoriasis is easily recognised and easy to diagnose. But it is unpredictable, with sufferers potentially having both severe outbreaks and long periods with few or no evident symptoms. However, it can not be cured, and is likely to reappear, even after many years without symptoms have passed. Although the worldwide statistic is given as 2 to 3 per cent of the population, studies show that psoriasis does not affect all races equally. Up to 5 per cent of those of white European descent are affected. A TNS survey in 2004 showed that although 69 per cent of adults know psoriasis is not contagious, only 51 per cent would be comfortable hugging or kissing someone with psoriasis. While 18 per cent would not be comfortable with swimming, eating food prepared by a psoriatic. In a 2001 US study, 60 per cent of sufferers reported that their psoriasis was a large problem in their daily life. 25 per cent of people with psoriasis have cases which are considered moderate to severe. The National Psoriasis Foundation in the US defines mild psoriasis as affecting less than 3 per cent of the body, while coverage of more than 10 per cent is considered severe. The event is spearheaded by the International Federation of Psoriasis Associations (IFPA), which is composed of psoriasis organisations from around the world. The IFPA has chosen the Burden of Disease as the theme of World Psoriasis Day A key strategy aim is to perform a global joint political action inspired by and modelled on the successful Capitol Hill Day-concept employed by the National Psoriasis Foundation, USA. The five main messages of WPD are: 1. Psoriasis is a severe inflammatory disease. 2. Psoriasis has a huge impact on people s lives, both physical, social and socioeconomic. 3. Psoriasis is not contagious 4. People with psoriasis must have access to appropriate treatments million people with psoriasis need to receive the attention they deserve. World Psoriasis Day is founded and sponsored by Merck Serono. Please join the World Psoriasis Day 2008 Facebook group.

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6 6 AN ADVERTISING INSERT BY MEDIAPLANET Challenges for children & Fame and psoriasis by the actor John Thomson I m glad I m not a Scotsman as my knees are by far the worst Actor and comedian John Thomson talks frankly about coping with psoriasis in the spotlight. BY KATHERINE ADAMS Best known for his role as the loveable Pete in Cold Feet and his array of characters in the award-winning Fast Show, John Thomson has also been suffering with psoriasis for the past six years. Like many sufferers, his psoriasis developed at a very stressful time in his life. It first came on when my anonymity ceased and I was recognised wherever I went, says Thompson. I couldn t cope with all the press intrusion into my private life and the whole being under the microscope thing. I was a soft target for the tabloids at the time because I m quite a sensitive person and that s exactly when I first noticed the flaky skin which turned out to be psoriasis. While the 39-year-old actor only suffers from a moderate form of the disease he describes it as quite a bind at times. He says: I usually get it on my arms and legs with the worst affected areas being my elbows and knees. Let s just say I m glad I m not a Scotsman as my knees are by far the worst. The comedian has tried everything from Chinese herbal remedies to UVA rays to rubbing in grapeseed oil, all of which had no effect: Everybody s got a remedy from burying a potato in the back garden to the proper stuff. I tried the Chinese tea bags for a while but they were just awful. The tea s so revolting. I don t know if it s been proven to work because I doubt anyone can go the distance of drinking it. I would like to try the PUVA [a light-sensitising medication Psoralen combined with exposure to ultraviolet light] again but my work schedule is so sporadic Photo: Chloe Hall John Thomson A challenge for all ages Although psoriasis symptoms, such as plaques can appear at any age, it is not uncommon for them to appear before adulthood. About one third of adult sufferers develop the symptoms before the age of 16, most commonly in puberty. It is less common to appear in infancy, with only 2 per cent of total sufferers developing symptoms before the age of two, according to a paper being written by Dr David Atherton, honorary paediatric consultant of dermatology at Great Ormond Street Hospital in London. BY LYNNE ROBINSON Children and teenagers are prone to the same spectrum of severity of psoriasis as adults, although some forms of psoriasis are more apparent among younger people. Guttate psoriasis, for example, is a common childhood form of the skin disease that usually affects children between the ages of 8 and 16. It is often triggered by a streptococcal bacterial infection, normally in the throat. This form of psoriasis may clear, given effective treatment (see below), or it may develop into different forms of psoriasis, such as plaque psoriasis, which is more common across all ages. Although symptoms may clear, little is known about long-term prognosis of remission into adulthood. The range of treatments available to children are similar to those offered to adults - primarily moisturisers and emollients, prescribed topical applications such as steroids and vitamin D derivatives, UV treatments and stronger drugs such as methotrexate ciclosporin and biologicals. In general, as with adults, doctors will start with topical treatments, and work through the options. Dr Atherton believes that GPs need to be especially vigilant if children are to receive the optimum care they deserve. Children don t like to talk about things, so you could get the impression that they re coping quite well when they re not. It s certainly the case with younger children that they can be suffering quite badly with psoriasis and need help. At the same time he expresses caution in prescribing treatments. In particular, topical steroids are used much more freely in adults, but children s skin is more easily damaged. And teenagers may develop stretch marks from the use of steroids, because of their rapid growth. He adds: At the upper end of severity, there are advances in effective treatments, such as the newest biological treatments, but not at the milder end. Some of these are suitable for children. It is the psychological impact of their visible symptoms that can have the greatest impact on teenagers, a fact many parents are aware of. Although some sufferers may find it easier to adapt, others, even with mild symptoms, find it emotionally debilitating at an age where there is a lot of emphasis on social development and a positive awareness of body image. A study of a range of skin complaints, published in the British Journal of Dermatology in 2006, found that psoriasis had the most adverse effect on a child s quality of life. Dr Saleem Taibjee, a consultant dermatologist at Birmingham Children s Hospital and member of the British Association of Dermatologists, uses a quality-of-life index to determine how psoriasis affects the patient s ability to interact with peers, their confidence, their ability to form relationships, and even their attendance at school. Psoriasis significantly affects their quality of life, says Dr Taibjee. Some patients are referred to psychology services so that they can explore cognitive behavioural issues with their psoriasis and issues of body image. Sometimes these are patients whose skin is responding effectively to systemic treatments, but who still have significant issues with how their psoriasis affects their life. Although topical treatments may prove effective for many teenagers in improving their symptoms, some patients, particularly adolescent girls, are reluctant to use these often messy and awkward preparations. This can cause a conflict between teenagers and parents who are concerned that their children are not taking their prescribed course of treatment. Compliance with using their treatments is a significant issue, says Dr Taibjee. Many of the topical treatments we prescribe are supposed to be used twice a day. We often find they are only being applied once. A teenager does not really want to be applying greasy ointments to his or her skin, especially before school. Some of the preparations we use on the scalp, for example, coal tar and coconut oil, can be effective if used regularly, but they re just not very pleasant to use. Other adolescent issues, such as smoking, alcohol and sex education, may be relevant to skin health and to the safety of systemic drugs, says Dr Taibjee. It is important to provide an environment where teenagers feel comfortable discussing these issues in conjunction with dermatological treatment, without their parents and in a confidential setting. According to Dr Taibjee, the most important development in recent years is the greater emphasis on careful transitioning from paediatric dermatology provision to adult services. He says: As children develop into adolescents and develop a relationship with the people looking after them at the paediatric hospital, it then becomes very difficult to move to an adult service where it is quite a different environment. The Psoriasis Association has produced information specifically targeted towards children and teenagers, with an interactive CD-Rom for children, and PsoTeen literature which provides helpful tips for young people on how to manage life s stressful periods, such as exams and making a career decision. There is also a dedicated teenage forum for online discussion at the Psoriasis Help Organisation ( A Parent s Guide is also available from the Psoriasis Association, giving tips to parents on how to sensitively address issues associated to psoriasis with their children.

7 AN ADVERTISING INSERT BY MEDIAPLANET 7 it s hard to commit to a full course. Apparently Crème de la Mer [a coveted miracle cream made from sea kelp] is meant to be brilliant but it costs 800 a pot or something and I m not a millionaire. I m also a bit more wary of the beauty products; I tend to go for old-school products like the coal-tar therapies. However, having said that, Thomson has considered trying the unique option of bathing with doctor fish, which feed off the skin of patients with psoriasis: At one point it was so horrendous I was tempted to go to Turkey where there s these fish that eat the dead skin cells. I didn t in the end but I did carefully consider it. Thomson is currently using a synthetic form of vitamin D3, which works by slowing down the rapid growth of skin cells. Available on prescription, it has helped Thomson s psoriasis immensely: It s not half as bad now I m on this cream and so long as you get into Types of psoriasis Plaque psoriasis: The most common form, affecting 80 per cent of sufferers, appears in raised, scaly patches, with clearly demarcated borders with plaque size varying up to several centimetres in diameter. It most commonly appears on the elbows and knees but can cover up to 80 per cent or most of the body surface. a routine then it s OK. It is a chore to apply every night but you just have to force yourself to get on with it because if I don t then I suffer remissions. There s no cure but I can cope with it as this level. The actor insists that applying the cream when hot also helps: If you rub the cream as hard as you can so that it creates some friction and you actually feel a degree of heat from it, when you put it on your arm it works much better than just applying it cold. It also helps a lot more if you do it just after a bath. W h e n washing hair, Thomson uses T-Gel shampoo. He says: Sometimes my scalp is like a coral reef which is really not a good look but if you use a tar based shampoo it just goes. It s terrific. The comedian has also noticed a change in his psoriasis whenever he adjusts his diet. While preparing for his wedding in 2005, he went on a health-kick to lose weight: When I was on a diet I didn t cut carbs out but I only ate good carbs like rice and pasta and avoided things like bread and cake. When I cut those out I saw Scalp psoriasis: is also common among about 50 per cent of psoriasis sufferers and appears particularly around the hairline and the back of the head, causing irritation, soreness and, because of its high visibility compared to some body psoriasis, social embarrassment. The condition can range from mild, with only slight, fine scaling, to very severe, with thick, crusted plaques covering the entire scalp. In very severe cases there may be some temporary, localised hair loss, but not permanent baldness. Scalp psoriasis: meeting the challenge It s not just the way it looks - it s the way it feels Owing to its visibility, psoriasis of the scalp has a significant impact on a sufferer s quality of life. Depression, low self-esteem, frustration and problems with relationships are frequently reported. People with psoriasis often describe their scalp involvement as the most difficult aspect of the disease. Shortcomings of existing treatments To date, the use of topical treatments in scalp psoriasis has proved challenging. Applying medications under the hair can be difficult and, given that plaques on the scalp are often thick and scaly, some treatments do not penetrate adequately. Additionally, many treatments require multiple daily applications and are slow to act. a marked improvement so I m convinced that there s a connection between the flour and my psoriasis, or perhaps the yeast and psoriasis. Despite suffering from the disease for six years, John insists that it hasn t stopped him from doing anything: I ve still been able to go out and act. You do get people looking sometimes, which can be embarrassing, but there are creams and make-up that can sort it out. My message to other sufferers would be to just keep it under control by using what ever is necessary and works for you. And if it s bad, don t be shy. Enough people have got it so don t lock yourself away; people just need to be a bit more aware that it s not contagious or won t do any harm to others. The former Cold Feet star is soon to be returning to television as down-on-his-luck children s entertainer and electrician, Jessie, in Coronation Street. While he is currently only scheduled in for three episodes, he hints that there could be more in the pipeline. Sticky, unpleasant odours and messy preparations are often associated with traditional therapies. In recent surveys of scalp psoriasis patients, time-consuming and ineffective are ranked as the two leading complaints with existing topical treatments. These range from steroid creams and medicated shampoos to coal tar and vitamin D derivatives. Many of these therapies can be highly effective, but for patients to gain benefit they must find them both cosmetically acceptable and easy to use in the long term. Unfortunately this is rarely the case. It is perhaps not surprising then that so many patients express a high level of dissatisfaction with current therapies. High on many patients wish lists are rapid onset of action, long-term safety, easy to apply and non-greasy. A look to the future These findings support the need for new treatment options. With the emotional and social consequences of scalp psoriasis, the often unbearable physical symptoms, and the practical and therapeutic limitations of currently available treatments, it is likely that any move towards faster acting, easily applied and cosmetically acceptable treatment options will be welcomed by those with the disease and the professionals who treat them. Guttate psoriasis: is a localised rash of small spots, up to one centimetre in diameter. It is most common in children and teenagers, usually appearing on the body core and limbs. The symptoms can appear very suddenly, a common trigger being a streptococcal throat infection. Up to 50 per cent of those affected will not have another outbreak, although it may become chronic or evolve into another form of psoriasis. Nails (Psoriatic Nail Dystrophy): Discoloured and pitted nails are symptoms of nail psoriasis. At its most severe, the nail can split away from the nail bed. Flexural or inverse psoriasis: This occurs in skin folds, such as in the armpits, under the breasts and in genitals its appearance is very red, shiny and less scaly. Inverse psoriasis is particularly subject to irritation from rubbing and sweating because of its location in skin folds and tender areas. It is more common and troublesome in overweight people and people with deep skin folds. Pustular psoriasis: Localised pustular psoriasis takes the form of raised, round yellow areas of skin Types of psoriasis Top 10 tips for sufferers 1. Join a support group: contact the Psoriasis Association s helpline ( ), or meet fellow sufferers online at 2. The more you understand, the better you will be able to cope. Your GP and, for severe cases, a consultant dermatologist should be the first port of call. Certain tests - PASI (Psoriasis and Area Severity Index) and DLQI (Dermatology Life Quality Index) - will help to monitor the disease development and efficiency of treatments. 3. Minimise stress. Consider stress management techniques such as cognitive behavioural therapy, regular yoga and other holistic exercise routines. 4. Save up for a spa trip - the daily regimen of sunshine, mineral baths and relaxation can alleviate the symptoms. 5. Keep a food diary and monitor your diet. There is no proven link between specific foods and psoriasis flare-ups, but some sufferers say their symptoms are aggravated by shellfish or spicy foods. 6. Stop smoking. In 2007, a US study in the American Journal of Medicine claimed that smokers are more likely to have psoriasis than non-smokers. 7. Drink less. Some sufferers report a link between alcohol and the severity of their symptoms, although for others it has no impact. 8. Sunbathe responsibly. UV rays are thought to help slow the turnover of skin cells, but take care as some psoriasis-prone areas burn easily. 9. Manage your weight. A 2007 study in Massachusetts concluded that overweight women have an increased risk of developing psoriasis. 10. Keep moisturising regular applications of a moisturiser such as E45 cream should improve the appearance of psoriasis. filled with pus, which appear under the skin surface of the palms, soles or both. The pustules present in a studded pattern throughout reddened plaques of skin, then turn brown, peel and become crusted. The skin s appearance will be a combination of these brown spots and yellow areas. The condition s course is usually cyclical, with new crops of pustules followed by periods of low activity. Generalised pustular psoriasis, a rare form of psoriasis which appears abruptly with widespread areas of very small pustules on a background of red, tender skin, is a medical emergency, due to loss of fluids and heat. Erythrodermic psoriasis: A particularly inflammatory form of psoriasis which covers most of the body, it is characterised by widespread, fiery redness which leads to skin shedding and severe discomfort, and also requires hospitalisation to replace lost fluid and prevent hypothermia. Psoriatic arthritis : Up to 20 per cent of psoriasis sufferers may suffer from psoriatic arthritis, which can follow a pattern similar to rheumatoid arthritis, and cause discomfort and pain, with the possibility of serious deformities.

8 8 AN ADVERTISING INSERT BY MEDIAPLANET Panel of experts Experts tackle real issues beyond skin deep From the latest psychological findings to treatments on the Continent, five leading professionals working in the field of dermatology reveal their views on psoriasis. Dr David Eedy, Consultant Dermatologist and Honorary Secretary of the British Association of Dermatologists, writes: How do you view psoriasis (a personal take)? The treatment of psoriasis has to be viewed as potentially a long-term issue. Psoriasis cannot be cured, but the effectiveness of treatments has improved immensely over the past few decades. The most effective treatments are probably those for patients with the most severe psoriasis. These include ultraviolet light, tablet treatments and injections (biologics). These, however, are reserved for the most severe types of psoriasis and in some ways patients with milder forms of the disease lose out as the extent of their psoriasis does not warrant the risks of the more potent treatments. It could be said that patients with severe psoriasis are likely to be referred to consultant dermatologists earlier, and have more effective treatments. Which treatments are really effective? Treatment has to match the patient s stage or extent of psoriasis. One cannot prescribe potent treatments, with potential side effects, for patients with relatively mild psoriasis and patients must understand the responsibilities placed on doctors to help them assess the risk-benefit ratio. Patients cannot just start on the potent treatments unless their disease severity warrants this. Some topical treatments are highly effective for relatively mild psoriasis, which represents the vast majority of patients. Other very effective treatments include forms of ultraviolet light and drugs such as methotrexate and ciclosporin but all have side effects. Newer treatments known as biologics are given by injection, they can only be used when the other treatments have failed and the patient has extensive psoriasis. All of these treatments can be highly effective. Some patients suffer with pains in joints (arthritis) which can be crippling. Again the oral or injectable treatments are particularly useful here. Getting the help of a clinical nurse specialist can be useful they can be a point of contact when psoriasis flares and give patients much valuable practical help. Sadly the presence of a clinical nurse specialist is too infrequent in the UK and can usually only be accessed at large dermatology departments. What would really improve people s perceptions of psoriasis? We need high profile patients to talk openly about psoriasis to make others realise it is not infectious, and cannot be caught from someone. We must not ignore the psychological impact that psoriasis can have on patients We need patients to have a good experience of treatments from the medical services so that they tell others that something can be done to help psoriasis. Negative feelings are engendered when patients try to get effective treatment only to be disappointed. Doctors and nurses must aim to give high quality care and improve the global outcome (physical, psychological, work, interpersonal) of treatment aspects of the patient s lifestyle. We need more publicity around how psoriasis can cause embarrassment and not to allow psoriasis patients to be discriminated against. Where/how should sufferers seek help? The first port of call should be their GP. GPs manage the vast majority of mild psoriasis in the community. Creams and ointments will probably be used for the foreseeable future for mild forms of psoriasis. With increasing severity or when adequate progress is not being achieved the patient should be referred to a consultant dermatologist. They are the experts in the management of psoriasis but generally treat the more severe forms. What s in the pipeline for the future? Targeted drugs such as the injectable biologics are probably the way forward. They remain new drugs, with potential side effects, many of which are still to be fully evaluated, but are likely to become more effective with time. As we understand the immune basis of psoriasis more, it is likely that new drugs taken by mouth (oral) which are more targeted against those parts of the immune system involved in psoriasis are likely to be developed. Dr Donal Fortune, pioneer of the CBT method with psoriasis sufferers and Dr Helen Richards, Lead Clinical Psychologist, Mercy University Hospital, Cork, write: I wanted to look normal for my school prom Sophie Edwards, 16, has suffered from psoriasis since the age of 3, and has been seeing a dermatologist ever since. She has had plaque psoriasis on her knees, elbows, scalp and face. I wasn t bothered about my psoriasis before the age of 11, but then I started becoming aware of my body. At junior school I got called names like scabby and spotty and it really upset me. My friends didn t mind about it, but I felt very down. My dermatologist referred me to a counsellor, and I was on antidepressants, but nothing helped. It made me feel worse to talk about it. I didn t know anyone else who had it except for my mum and my nan, and theirs doesn t bother them. I ve tried all kinds of treatments; but I didn t get good results until I started using methotrexate. I didn t like using creams because they were greasy and ruined my Our skin is undeniably tied up with our identity. It is in the expression of other people that we see ourselves most clearly reflected, and such a process becomes a significant means by which we may feel respected, loved, or accepted as a person. When a person develops psoriasis, they may have to contend with the knowledge that they are visibly different to others, and that even when the condition is not visible to others, they still possess this unwanted difference; this recurrent condition which for some people may become a stigma. Psoriasis does not have to be visible to other people for some patients to fear and anticipate their censure; nor does it need to be obbedsheets and my clothes. I talked to my dermatologist about three months before my school prom, because I really wanted to look normal for it. Not everyone at school knew I had psoriasis, I didn t like using creams because they were greasy and ruined my bedsheets and my clothes but they must have thought it was strange that I was the only one wearing my blazer in summer. I wouldn t take it off, and just taught myself how to cool down. My dermatologist was very understanding, and let me up my dose of methotrexate to 15mg per week. He lets me have a say in what treatments I want. It s horrible it makes me vomit and I m sick and off school for two days, and I m not sure about needles. But I was really pleased that my skin was almost clear for my prom. I was too embarrassed to tell my boyfriend about my psoriasis for about three months I just wore long sleeves all the time. He says he had noticed it but he isn t bothered about it.

9 AN ADVERTISING INSERT BY MEDIAPLANET 9 Panel of experts jectively severe to warrant significant disability and distress. A few small plaques can be as socially and psychologically disabling as a substantial area of involvement and generally up to one in four patients may experience clinically significant distress. The belief that such psychological stress affects the course of the condition tends to have common currency in the experience of patients, with studies demonstrating that between 37 per cent and 88 per cent of patients report their psoriasis gets worse or started at times of increased stress. While a range of therapeutic psychological approaches have been investigated in relation to psoriasis, cognitive behaviour therapy (CBT) approaches in conjunction with medical management appear to hold the most promise for people diagnosed with psoriasis. CBT specifically targets patterns of unhelpful thoughts and beliefs held by patients, and aims to change the effects of such thoughts and beliefs on how people feel and what people do. A number of studies have shown beneficial effects of CBT on psoriasis patients levels of distress. Published studies of CBT approaches for people diagnosed with psoriasis have usually entailed attending for six to 12 weekly sessions with a clinical psychologist, and results have shown some early promise. Work at both the University of Manchester and University of Nijmegen is developing internet based cognitive-behavioural approaches for managing psychological symptoms associated with psoriasis. While such studies are in their early stages, internet approaches in conditions such as depression have been shown to have promising results and are recommend by NICE. Therefore results of such studies will be awaited with interest by clinicians and patients alike. Professor Torello Lotti (above left), a leading dermatologist at Florence University, and Professor Andreas Katsambas (above right), president at the European Academy of Dermatology and Venereology,reflect on the variations of treatment practice across Europe. Some drugs are very popular in German speaking countries, such as fumaric acid esters, which are not available in southern Europe. There are also differences in the use of systemic treatments. Italy is served by an excellent dermatologic community, which is extremely active in the treatment of psoriasis and is well harmonised with patient organisations and administrators. The PSOCARE network, created by the Italian Pharmaceutical Agency to install centres of excellence for the systemic treatments of psoriasis, is considered a great success internationally. It is the best public network available for the continuous treatment of psoriasis. Having a dedicated dermatologist available to the public in medical centres, in a precise clinical design, makes the difference. On the situation in Greece, Professor Andreas Katsambas, president elect at the European Academy of Dermatology and Venereology, says: The health authorities in each country vary in their reimbursement policies. However, in Greece, following the efforts of dermatologists and specific psoriasis organisations, the health authorities fully reimburse psoriasis treatment provided that it has been prescribed by national dermatological centres. In Greece, as in most European countries, psoriasis patients are examined primarily by dermatologists and not by GPs. Therefore, psoriasis patients can be treated more suitably from the very beginning.

10 10 AN ADVERTISING INSERT BY MEDIAPLANET The deadly side of psoriasis The threat of a heart attack is not a typical worry for a woman in her twenties. However, female sufferers of severe psoriasis have been found to be five times more likely to suffer from a heart attack than other females of their age. As well as heart attacks, psoriasis sufferers are more prone to strokes, high blood pressure or peripheral vascular disease. Professor of Dermatology and Medicine at the Memorial University of Newfoundland, in Canada, Wayne Gulliver, has been studying comorbidities in psoriasis for the past 15 years. He says: The immunology and inflammation that occurs in the skin is very similar to the inflammation that occurs in the coronary arteries during a heart attack, increasing the risk of mortality due to cardiac disease among psoriasis sufferers. However, there are ways of counteracting the threat of heart problems such as the systemic drug methotrexate, which has been somewhat successful and, potentially, the new biologics. There are also a number of lifestyle choices a person can make, according to Professor Gulliver: The most important thing for people who are diagnosed early is to keep their weight down and keep their blood pressure and cholesterol low by doing exercise and eating healthily. Psoriasis sufferers are losing 10 to 25 per cent of their life span and are a huge burden on the healthcare system so an important message is to keep eating healthily and, as we know it is a genetic disease, keep Co-morbidities and genetics your family eating healthily. As well as the increased likelihood of cardiac-related problems psoriasis sufferers may be more prone to a number of additional illnesses including, obesity, diabetes, anxiety and depression. According to data collected by America s National Psoriasis Foundation, people with psoriasis are twice as likely to have suicidal thoughts as people without the complaint, or with other chronic conditions. Of the one in 50 people who have psoriasis, up to 20 per cent will develop psoriatic arthritis. This is likely to attack joints, from the neck to toes, in a certain pattern. It s not always easy to tell the difference between psoriatic arthritis and rheumatoid arthritis but a history of psoriasis in the sufferer or his or her family, plus arthritic symptoms is one way a doctor would be able to diagnose it. People with psoriasis are also at an increased risk of developing cancer. Research has shown that lymphoma, a group of cancers affecting the lymph tissue, is almost three times as common among people with psoriasis. Research from the University of Pennsylvania showed that lymphoma affected 276 people in 108,000 people over 65. Analysis showed that an extra 122 cases of lymphoma per 100,000 patients a year were found among psoriasis patients. However, the research wasn t able to claim whether the higher risk was due to the psoriasis or the treatments used on psoriasis, and previous research had shown that certain drugs used to treat severe psoriasis and suppress the immune system were associated with an increase in lymphoma. Family matters Because psoriasis is not yet fully understood, the causes of it are unknown. However, about 30 per cent of people who suffer from it have a family history of the condition. Dr David Atherton, honorary paediatric consultant of dermatology at Great Ormond Street Hospital says: The cause is one of the things we don t understand exactly; although it s clear that, like eczema, it s largely genetic. It commonly runs in families and without that predisposition you are unlikely to develop psoriasis. One in three people with psoriasis has a close relative who also has the condition. The other two in three people may have inherited a mix of genes from both sides of their family which, in combination, can lead to psoriasis. If a child has one parent with psoriasis, its chance of developing it is around 15 per cent. There are three genes that are definitely linked to the skin complaint - SLC9A3R1, NAT9 and RAPTOR however a large proportion of people with these genes never develop skin problems. In fact, ten million people in the UK are thought to carry the genetic variants but only a million of those show symptoms of psoriasis. These genes are also linked to other immune-related conditions such as rheumatoid arthritis or type 1 diabetes. Other research carried out recently has shown scientists that some people have more than one copy of a certain gene and they ve speculated that this could cause some common diseases. Beta-defensins are a cluster of genes which can occur in the general population between two and 12 times. They are expressed in ten the skin and can induce inflammation in response to infection or environmental triggers. This has caused scientists to suggest in Nature Genetics that an increased number of beta-defensins might increase the risk of developing psoriasis. But it s not only genes that lead to psoriasis. There need to be triggers to cause the disease, and this is another area where more research is being done. Sore throats with the streptococcal bacteria, stress, injury to skin from a scratch or insect bite, changes in hormone levels, alcohol in excess and smoking are all thought to be possible triggers. In fact, million people in the UK are thought to carry the genetic variants but only a million of those show symptoms of psoriasis

11 AN ADVERTISING INSERT BY MEDIAPLANET 11 Research and discoveries Research and discoveries Over the past four years research into the development of psoriasis has dramatically changed the way the illness is perceived, leading to the finding of new and effective ways of coping with the disease. BY KATHERINE ADAMS Biological therapies in the form of regular self-administered injections or medicine through an IV drip have transformed the lives of people who suffer with severe forms of psoriasis by targeting a chemical signal in the immune system. Professor of Dermatology at the University of Manchester, Christopher Griffiths says: As a result of laboratory work over the past 20 years it has been shown that psoriasis is a disease mediated in part by components of the immune system. As a consequence new biologic therapies, some of which were developed for the treatment of arthritis and Crohn s disease, are now available through the NHS for the treatment of severe forms of psoriasis. These treatments have really changed the way we manage severe psoriasis and the big advantage is that they specifically target key pathways in the immune system, responsible for the development of the disease without having a direct effect on the kidney or liver. While a cure is yet to be found, Professor Griffiths believes that this is an ideal therapy for some patients, describing it as long-term continual control of the disease with minimal monitoring. Doctor Diamant Thaci, Director of Clinical Research Division at the Johann Wolfgang Goethe-University in Germany says: For a dermatologist with a focus on clinical research and especially psoriasis, we are living in very exciting times. These biologics are the biggest developments in the treatment of psoriasis for the past 20 years and can now offer a hope to patients who had previously given up on finding a successful control of the disease. Sufferer, Charles Skeer has had severe psoriasis since 1981 and has been on a biological, for the past two years. He says: It became effective within a couple of weeks of using it and after 12 weeks I had a 60 per cent clearance rate which was just incredible. I inject myself once a week and I ve got into a rhythm so that I don t even think about it now; it s just all part of the routine. I can t emphasise how much it has transformed my life. I m able to help out in the kitchen at home now without having to second think about how bad my skin is, and go to the swimming baths whenever I please. The new biologics are looked upon much more favourably by doctors than their predecessors, systemic drugs. In Norway, new national treatment guidelines have even contraindicated the latter due to their limitations in the longterm. Dr Thaci said that the new biologics are not only much more target specific but also have a better benefit to risk ratio than many of the systemic drugs: The first trial has proved that the clinical response of biologics, in direct comparison with traditional systemic drugs, has a rapid onset of action and achieves a higher responder rate and are at least as safe as systemic drugs available on the market. However, while these new biologics have proved to be successful for a number of patients there are downsides to the drugs. At 10,000 a year, the biologics are hugely expensive and the National Institute for Health and Clinical Excellence (NICE) has laid down strict criteria for those eligible for this kind of treatment, funded by the NHS. Another worry for doctors is the lingering uncertainty over the long-term side effects that these new drugs could have on patients. Professor Griffiths says: Although we know the anti-tnf (tumour necrosis factor) drugs used for arthritis are safe, we have not used them for psoriasis for any length of time so we just don t know for sure that long-term use won t throw out some side effects that we re unaware of. To monitor any changes in health over time, every psoriasis patient being treated with a biologic will be put on a national long-term biologics register - the British Association of Dermatologists (BAD) Biologicals Interventions Registry. Even today, psoriasis remains something of an enigma to experts. While doctors confess that there are still gaps in their basic understanding of the disease, slowly but surely the mysteries of psoriasis are being unraveled in the hope that one day a cure might be found. Merck Serono supporting World Psoriasis Day 2008 Since 2004 we have been providing sponsorship, support and resources to an annual day which is specially dedicated to people with psoriasis. Each year a wide variety of activities take place around the world, these have ranged from the distribution of leaflets and postcards to the staging of large arts and sporting events, together they have helped to make each WPD a huge success and generate worldwide media interest. Last year we organised activities all over the world, from Canada to Thailand and this year we aim to do even more...

12 12 AN ADVERTISING INSERT BY MEDIAPLANET Connect and relax Retreats that offer hope and R&R When the going gets tough, here are five alternative places within easy reach of Europe - from Iceland to Israel - where psoriasis sufferers can get away from it all. They don t hold secret cures and unlike on the Continent will not be prescribed on the NHS, but they may afford sufferers some relaxation and temporary relief from the discomfort and distress of psoriasis. Many destinations combine the concentration of salt and minerals in the sea or thermal springs with a warm climate, sunshine and strictly controlled UV treatment. Doctors are uncertain why salt water is an effective complementary therapy to sunlight but it is clear that the two work well together and can offer some patients respite from psoriasis for a number of months. Health resorts are likely to be staffed by understanding professionals and populated by fellow sufferers who often find a degree of comfort and support among each other. Dealing with the external manifestations of psoriasis helps people to cope better with the often demoralising mental side of the condition. Just by taking action into their own hands provides a psychological boost for some people and helps to promote wellbeing. Spa Smrdaky, in Western Slovakia, alleviates the symptoms of sufferers through its intensive treatments of daily mineral baths combined with UV lamps. The feel is more clinical than kick-back resort, the grounds are roomy and the spa lives up to its stinky name with a sulphurous rotten-egg smell. Like many health resorts, the spa recommends a stay of threeplus weeks, but visitors have reported a marked improvement even after ten days. Treatments taken naked - include tars, salicylic acid creams, moisturiser and timed daily baths in the hydrogen-sulphide-rich waters. All-inclusive ten-day packages, including two medical examinations and five treatments a day, start from 599. ( The Daniel Dead Sea Hotel, in Ein Bokek, Israel is no quick-fix day spa. Many people book in for at least two weeks to treat a particular complaint such as psoriasis with a daily treatment following an in-depth medical consultation though it s always worth checking beforehand that they have staff on hand who speak fluent English. It is an authentic Dead Sea Shizen spa with 22 treatment rooms, Dead Sea pools and a 70-strong, predominantly Russian, platoon of therapists. The Dead Sea is only a short walk away from the hotel, where you can float and allow the oily minerals to seep into pores. The waters, weather and the high oxygen levels in the air put a decisive spring in guests steps ( ; Hydrotherapy Centre, Avène Les Bains, near Montpellier, South of France The spring water used in all the spa treatments at Avène is said to have remarkable healing powers. Its soothing property may be due to its long filtering journey through the mountains before it emerges in the It helps to be connected There is no doubt about it that psoriasis causes social difficulties for sufferers which range from awkward to paralysing. Many people with psoriasis have employed some form of avoidance strategy during their life. BY LYNNE ROBINSON This is echoed by a recent American survey which showed that 20 per cent of sufferers find their psoriasis socially embarrassing. Perhaps more tellingly, an Irish study in 2005 showed that 72 per cent of sufferers avoid swimming, 60 per cent avoid sunbathing and for half of the respondents it inhibited their love life. Even in sufferers with mild symptoms it may significantly impact their ease of social interaction. Although my friends are quite sensitive about it, and are used to it, I can get quite down when I m with new people, says Caroline, 32, a teacher who suffers from mild psoriasis on her scalp and elbows. I try to explain what it is to people. Although it s just part of who I am, I am self-conscious about it. I try not to wear dark clothes which will show up dandruff from psoriasis falling from my scalp. People manage their psoriasis in different ways depending on their personality, the severity of the condition and the support network available. Where the condition is highly visible sufferers may feel self-consciously different. Others may feel stigmatised from bad experiences or rejection from ignorant observers who are unfamiliar with psoriasis, or who may wrongly think it is contagious. Self-esteem issues can make sufferers reluctant to put themselves in new social situations, presuming others reactions to them will be negative, even if this is not the case. I ve never had a bad experience with a stranger, says Kate Mackenzie, 31, who works in publishing. But sometimes I feel very self-conscious as I work in a customer-facing role. I have psoriasis on my knuckles and am very aware of it when I show books to customers. Strangers will ask me innocently what I have done to myself, thinking I have been burnt. I automatically find myself explaining that it s not contagious. It always makes me feel better if they have heard of psoriasis already, and know what it is. That said, I have never worn a vest top or T-shirt in my adult life, except to the gym. And I am not as outgoing as I might be if I didn t have it. I don t put myself in social situations where I might meet someone. Guy Kennaway, 51, is the author of Sunbathing Naked and other Miracle Cures, a memoir of his search for a psoriasis cure. He has suffered from psoriasis since the age of 24, and first had it on his face. He says: I loved skiing and scuba diving, as I could cover my face. I sought out dark places, literally. I knew of every pub and club in Edinburgh with low lighting I was especially afraid of ultraviolet light which showed every flake, like stardust. I spent a lot of afternoons in dark cinemas. It really did affect my social life, and it made a lot of decisions for me. Because my psoriasis tended to come and go quite fast, I got it into my head the idea that it was a sort of commentary on my life and on my behaviour. I noticed that there were some people that when I went to see them it got really bad. It was particularly bad around a few of my family members and often strangers. I began to avoid those situations. I would make a social engagement, and notice that my skin would deteriorate in the days before it, especially if it was something testing like a wedding, or somewhere where I had to give a speech. Then I would cancel my plans and notice that my skin would immediately improve. My skin was living my life for me, like having a very dysfunctional friend or relationship. I hated it. Unlike a dysfunctional relationship it was impossible to leave it. I was really trapped inside it. In my late thirties, when my psoriasis was particularly bad, I had two small children of my own. I sought out the company of little children and even animals. I could relax more with them as they didn t seem to notice it. I was also drawn to people with skin problems, there s an understanding and empathy. I tend to like those people. Kennaway first met other psoriatics when a friend recommended he take a trip to a clinic at the Dead Sea. It was a huge change in my life when I first met other people with psoriasis. I found a community of people and that turned it on its head for me as I love those people and have a great time with them. That s when I started taking control of it. There are significant benefits to being part of a support network, many of which can be found online. There are several psoriasis-related Facebook groups with members from all over the world. The discussion forum at the Psoriasis Help Organisation ( has a thriving community of more than 8,000 members. Kennaway, a user of the forum himself, says: The website is buzzing with people who are talking safely behind their screens, so they don t have to reveal their skin. Instead they can reveal their character and personality. For some people that can be an important first step towards more normalised social interaction.

13 AN ADVERTISING INSERT BY MEDIAPLANET 13 Connect and relax Unique Healing Effects Clinic for psoriasis sufferers. The silica and blue algae, which give the lagoon its opaque colour, are thought to contain remedial properties for psoriasis, eczema and a host of other ailments. One of the benefits of Blue Lagoon s psoriasis treatment, compared to treatments in warmer climes, is that it does not require long periods outdoors exposed to sunlight, thereby decreasing the likelihood of skin cancer and untimely ageing of the skin. All treatment guests need to have a referral from a dermatologist and the clinic s dermatologists and nurses regularly examine patients and evaluate the results. The Blue Lagoon s natural treatment of psoriasis involves a combination of showers, bathing in the waters, use of in-house products and UVA/UVB light therapy. It is recommended that guests who enter an intensive full treatment programme bathe twice a day for one hour at a time. The treatment process normally takes days. A week s twice-daily treatments, with full board but excluding flights, costs from 928pp. ( Sex and psoriasis Blue Lagoon, Reykjavk Guy Kennaway describes Claire s fear of a new relationship. springs at Avène. A three-week stay usually begins with a consultation with a dermatologist, who prescribes a daily skincare regimen. Typically, this includes bathing and showering several times a day in the spring water. Treatments are tailored to deal with patients individual needs, for example, to help treat psoriasis on the scalp. The centre also offers workshops on applying camouflage make-up. Treatments, without accommodation, cost from 500 for three weeks. ( com). Balikli Kaplica Spa, Kangal, Sivas, Turkey The accommodation is cheap and functional but people come for the two hot open-air and two indoor pools, each home to hundreds of voracious doctor fish. It s all part of a treatment that claims to heal psoriasis at this remote spa 5,000 feet high in the Central Anatolia region of Turkey. The psoriasis treatment regimen takes dedication 21 days of twice-daily, four-hour bathing sessions in the fish pools is prescribed, plus drinking 1.5 litres of spa water a day on an empty stomach. The combination of the metalrich mineral waters, the fish and mountain sunlight leave many guests reporting a significant improvement in their skin condition during the treatment. According to experts, the removal of superfluous skin flakes by the nibbling carps and minnows aids sufferers because it may help topical medications to penetrate more deeply. Medical reports are ambiguous about the effectiveness of the spa for psoriasis sufferers. Although a study paper published by Dr Martin Grassberger, of the Medical University of Vienna, showed clear benefits to more than 70 per cent of patients and an average remission time of more than eight months. ( /53/54). The Blue Lagoon, near Reykjavik, Iceland, is home to pools of steaming, milky-blue, geothermal seawater open to all, and a Psoriasis has amongst its many claims the ability to really mess with your sex life. It s as if it enjoys doing it. When it s shameful to strip off and reveal your nakedness, sex becomes a nightmare, if not totally impossible. Of course Claire, who suffered from psoriasis patches on her buttocks and thighs, was scared that if Robert saw the so-called garment burns he d run a while. She had got no joy from the doctor s tubes of ointments, so when the moment came and she found herself in bed with Robert, she just hurriedly turned off the light and pulled up the bed covers to hide herself. It was brave of her to do even this. There are tens of thousands of people suffering from skin condition who have had to cut sex out of their lives altogether because they are too scared of rejection. Every time Robert s hand started going near my bum, she told me, I wriggled like mad so he wouldn t feel the patches, she laughed. It went on for months, and, of course, I always had to walk backwards to the bathroom. One morning he asked me why I never turned my back on him in the bedroom and I said it was because I loved him so much I couldn t take my eyes off him. He proposed a week later, she smiled at the memory. I said yes of course, and then thought, blimey, when am I going to tell him about the psoriasis? I m marrying under false pretences. Sunbathing Naked and Other Miracle Cures, by Guy Kennaway, is published by Canongate Books priced For advice: contact the Psoriasis Association s helpline ( ), or meet fellow sufferers online at www. psoriasis-help.org.uk.

14 14 AN ADVERTISING INSERT BY MEDIAPLANET Role of primary care Wake-up call for healthcare changes Around 80 per cent of people who suffer from psoriasis can be treated by their GP. While this may sound simple, many patients, especially those with more severe psoriasis, have become disenchanted with the NHS after being misdiagnosed, refused referral to a specialist or experienced a lack of specially qualified trained staff to care for them. An audit released in February 2008 by the British Association of Dermatologists (BAD) highlighted a deficiency in a number of services offered by the NHS where patients across the UK had experienced differing and sometimes sub-standard levels of care. Dr Colin Holden, President of the British Association of Dermatologists, said: The audit shows that on a national level, the NHS is failing to provide patients with the level of care they deserve. Basic elements such as bathing facilities, appropriately trained staff and access to treatments are lacking to a worrying degree. The audit found that 20 per cent of hospitals had no dermatology specialist nurses, 32 per cent had inadequate bathing facilities, in 41 per cent of hospitals topical treatments were applied by nurses who had no dermatology training, or by the patients themselves and, perhaps most worryingly, five per cent of hospitals did not have the appropriately trained person monitoring the UV output of the phototherapy equipment, despite this being mandatory. Bruce George MP, and Chair of the All-Party Parliamentary Group on Skin, concedes that the provision of dermatological services can vary startlingly across the country. Psoriasis sufferer, Kate Mackenzie noticed the discrepancies after receiving medical treatment from hospitals in both Exeter and London. While a student in Exeter she had to wait just two weeks for an appointment with a consultant but after visiting her doctor in London she was on the waiting list for three months. The audit shows that on a national level, the NHS is failing to provide patients with the level of care they deserve Similarly, she was shocked to find varying amounts of information available to patients: Recently I decided to see the doctor again who suggested that I tried tablets as nothing else was working. Previously I had only been prescribed creams so was very surprised to discover options that had been around for 40 years. At a recent meeting of patient groups, sufferers argued that primary care needs to be more efficient when educating sufferers on the availability of new biological drugs, some of which have been around for the past four years. Furthermore, with the new data concerning co-morbidities, it may also be beneficial to educate GP s on the severity of the disease and the need for early and continuous treatment to address the underlying inflammation as well as the skin symptoms. In response to the BAD audit, Helen Cook, a spokesperson for the Department of Health, said that it is up to each Primary Care Trust in consultation with local stakeholders to determine local priorities for improving services. She added: The Department of Health recognises the distress and discomfort that skin-related complaints can cause. There are a range of related services available on the NHS and NHS organisations are legally obliged to provide funding for treatments recommended by NICE technology appraisals. In an attempt to improve the treatment of those suffering with psoriasis, the Chief Executive of the Skin Care Campaign, Andrew Langford, spoke out in the House of Commons last year, highlighting the need to add common skin conditions such as acne, eczema and psoriasis to the Quality Outcomes Framework (QOF). This would, in turn, create an incentive for health professionals to take the disease more seriously and therefore produce a better service for patients. Langford said: For years, people with skin diseases have been overlooked by the NHS. Health professionals receive very minimal training in this area and as such patients are receiving a very low standard of care. There is a great need for health service provision to take a more holistic view in the treatment of patients. Changes in secondary care access, including the introduction of referral management schemes pose a significant threat to patient interest. It s a view echoed by Bruce George: Much of the burden currently falls on GPs, whose training may well have contained little on dermatology. This lack of training, and often interest, in dermatology can result in poor initial diagnoses, sub-optimal prescribing and inappropriate or non-referral to specialised treatment. Added to this, the contracting out of some dermatology services in primary care has led to cherry picking of the easier cases while more difficult cases are often left stranded between primary and secondary care. Another area where the services for psoriasis sufferers are lacking is the identifying and subsequent addressing of depression and anxiety that has emerged as a result of the disease. Professor of Dermatology at the University of Manchester, Christopher Griffiths, describes the understanding of the psychological difficulties encountered by patients with psoriasis and other chronic diseases as a severely unmet need within the NHS. If the Skin Care Campaign succeeds in adding psoriasis to the Quality Outcome Framework it will inevitably improve the level of standards of services offered by the NHS. In the mean time, the Skin Care Campaign is working to raise awareness of the physical and psychological impacts of living with the disease in the hope that one day the correct and reliable pathway of treatment for individuals is offered by the NHS.

15 AN ADVERTISING INSERT BY MEDIAPLANET 15 Treatment A treatment guide From coal-tar to biologics, we weigh up the pros and cons of a range of treatments for psoriasis. Topical treatments There are a number of topical therapies that can be used for moderate psoriasis, with creams and ointments being the most common. The creams contain chemicals similar to Vitamin D and work by slowing down the excessive growth rate of skin cells. Topical steroids are common among sufferers whose psoriasis covers five per cent or less of their bodies. Coal tar preparations used to soothe the skin are also popular and creams containing the tar should be applied to affected areas twice daily, avoiding sensitive areas such as the face and skin creases. Similarly, dithranol preparations can be used as a short contact therapy where the patient applies the ointments themselves every day for 30 minutes to an hour, gradually increasing its strength every three to five days. Positives: Generally effective on localised psoriasis if used properly; relatively easy to apply. Negatives: Limited efficacy and compliance are drawbacks. Creams can take up to 12 weeks to take ef- fect while the coal tar and dithranol preparations can be messy, odorous and time consuming to apply. Potentially, overuse can interfere with the body s absorption of calcium and strong steroid cream can thin the skin on the face, in fold areas and even interfere with sight if it penetrates the thin eyelid. Phototherapy Around 80 per cent of people with psoriasis experience an improvement in their condition having spent time in the sun. Phototherapy is the transmitting of the sun s rays onto a person s skin and usually applies to those patients whose psoriasis is so severe that creams and lotions have little effect. There are two types of phototherapy and they are administered in phototherapy centres located around the country. The first treatment is UVB rays where patients stand in a UVB cabinet for a few seconds to several minutes, usually two or three times a week for a period of several weeks. Patients are not required to take tablets. The second kind is PUVA therapy which is the use of UVA light, again in a cabinet, while simultaneously taking tablets known as Psoralens. This is most successful on thicker plaques of psoriasis as the rays are absorbed much deeper into the skin. Positives: Often has good results and is paid for by the NHS unless the patient decides to go private. Negatives: Exposure to the UV light can potentially cause skin damage, premature ageing and an increased risk of skin cancer. The skin can become red, dry and itchy so patients are encouraged to continue using creams and moisturisers while undergoing treatment. The Psoralen tablet can also make you feel sick but this can easily be counteracted. There is also limited accessibility to the phototherapy centres and regular visits can be time consuming. Oral Medications There are a number of systemic drugs, such as methotrexate or hydroxyurea, available to help with moderate to severe psoriasis, all coming with potential side effects and are best used short-term (no more than 18 months). Clinical and blood tests are required to ensure that patients are suitable for the drugs while women should not attempt to become pregnant while on them. Positives: Easy to use and available on prescription. Negatives: Methrotrexate s side effects include nausea and potential liver damage so no alcohol while taking the drug. Ciclosporin: - potential kidney damage, increased risk of infections, malignancy and hypertension. Patients should also continue to use creams and lotions. Biologics Biologics are the latest treatments for sufferers of moderate to severe psoriasis who have not responded to any other treatments. These biological drugs are made from living or animal proteins and act differently to systemics because they block the disease in its early development in the immune system. They are given intravenously through a drip or via an injection, either at clinic or at home, and are suitable for those with or without plaque psoriasis and severe psoriatic arthritis. Positives: Side effects are generally minor although allergic reaction to the injection can occur. Recent research has shown that a clinical response can be seen within four weeks of initiating treatment. Efficacy and safety data varies from six months up to three years depending on the which drug type. Patients are able to administer the injections themselves, thus reducing the need to go to the clinic for regular checkups. Negatives:Biologics can improve psoriasis for some people but not all and long-term safety is still being evaluated. They must be taken continuously to maintain improvement and are very expensive. Costing from 9,000 a year, NICE has laid down strict criteria for those eligible for the biologics paid for by the NHS. I lost my 20s to psoriasis SJ Crampton describes I was diagnosed with psoriasis by the family GP nearly 30 years ago, at the age of 10. I was the only member of my family to suffer and I didn t meet another person with it until I was in my early thirties. When I was young, any discussion about treatment always took place in a doctor s room and did not include me; they spoke over my head to my mother. In fact, I sometimes wondered whether I needed to be there at all, seeing as they continually prescribed the same creams and weren t the least bit interested in me or my skin; apply this twice a day and I ll see her in 6 months.... There was never any mention of how I felt, how I coped with the feelings of worthlessness, despair and depression. By the time I was 16, I gave up on traditional medicine. My psoriasis just seemed to have a mind of its own, regardless of how much I complied with the creams I was prescribed. I decided to turn to alternatives homeopathy, diets, Chinese herbs. I tried everything. If you told me rolling in cow dung would help, I would have happily rolled. My psoriasis seemed to laugh at my efforts and marched on. I retreated and gave up completely. These were particularly miserable years. I lost my twenties to psoriasis. It won. I became more isolated, more depressed and hid myself and my skin from the world. In my late twenties I was offered systemic drugs. I didn t know you could take pills. I also didn t know they could have side effects. I ended up having a liver biopsy because the organ was complaining about the amount of pills I had swallowed. And still I had severe psoriasis. At its worst, it covered 70 per cent of my body. When I moved area, another doctor prescribed UV. Result! For the first time in my life I had some respite from psoriasis: I swam, I wore T-shirts, I began to live life but you can have too much of a good thing: my remission time got shorter with every treatment and eventually, I used up all my life-time joules [units of energy]. In 2003 I went out to the Dead Sea for the first of many visits. I may have used up my joules in the UV booth, but I could go out to Israel and soak up the rays there. I have spent a fortune going out to the Middle East for my skin and it has certainly helped me, but like everything else, the remission times were short. I seemed to have tried and failed everything. In 2006, I realised I was a candidate for the new biologicals. I convinced my dermatologist and we applied for funding from my Primary Care Trust. It was to become a lengthy process taking over a year. In 2007 I started self-injecting a biological but it wasn t effective for me. So, in February this year, I began another biological and in a few months my psoriasis went from 60 per cent coverage down to less than 1 per cent. For the first time in my life, I have a continued remission from psoriasis. It has been a long roller-coaster ride of a journey, but it seems I have actually found a treatment that works for me and I feel I can look to the future. Thanks to a weekly injection, I can say life truly begins at 40.

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