Campaign for change A look at the 2012 Conference

An inspiration to all Josef de Guzman on his experiences

AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

PHOTO: SHUTTERSTOCK

FOR 125 MILLION PEOPLE WITH A HIDDEN DISEASE, HERE’S HOPELET’S TALK ABOUT PSORIASIS- AND TAKE ACTION!

World Psoriasis Day is presented by IFPA,the International Federation of

Psoriasis Associations

.

BEAT THE STIGMA

A need for better understanding: Awareness and recognition are key to changing the perception of psoriasis

PSORIASIS

No.2 / Oct. ‘11

CELEBRATING WORLD PSORIASIS

DAY

A SPECIAL

ISSUE

2 · OCTOBER 2011 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

Working towards a brighter future

Our Commitmentto Psoriasis

At Janssen we are one team working together on behalf of patients every day. We are committed to making a difference to the lives of people living with psoriasis. Visit www.psoriasis360.com for more information about psoriasis. Created by Janssen, this site is a comprehensive source of information for people with psoriasis and their families and friends.

Janssen. Extraordinary efforts for a normal life.

www.janssen.co.uk

Artwork from The Creative Centre: Betsy Gross, Lilies and Carp

©Janssen-Cilag Ltd

UK/NPR/2011/0134aSeptember 2011

Psoriasis

Psoriasis is a global disease that demands worldwide efforts. Research continues apace, with exciting developments that promise hope for the millions of people globally who live with psoriasis – but there is still more to be achieved.

Psoriasis is a chron-ic, inflammatory disease that affects 125 million people worldwide. In sever-al scientific studies psoriasis has been

connected to a number of co-morbid conditions, mainly psoriatic arthri-tis, but also cardiovascular diseases, Crohn’s and other gastrointestinal disorders. An increasing number of studies also show the negative ef-fect psoriasis can have on quality of life – as much as that seen in car-diovascular diseases, cancer, diabe-tes, and other serious medical con-ditions. This report looks to address all of these issues and to highlight the agenda for the years to come.

IFPA is a rapidly growing organ-isation with 44 national patient associations and regional activi-ties the world over. IFPA’s most important activities are World Psoriasis Day, Under the Spotlight, the World Psoriasis and Psoriatic

Arthritis Conferences, advocacy, and support to our members.

One of IFPA’s many achieve-ments so far has been to persuade the experts at the World Health Or-ganization (WHO) that psoriasis is a serious, chronic, inflammatory disease. We are currently working on getting this officially declared, as well, and to have October 29 rec-ognised as World Psoriasis Day.

In September, the United Nations

High-Level meeting on the preven-tion and control of noncommuni-cable diseases adopted a resolution to prioritise these diseases, as they constitute the largest cause of death and of health-related costs. Recent-ly granted Special Consultative Sta-tus to the UN Economic and Social Council, IFPA represented the glo-bal psoriasis community at this im-portant meeting.

The World Psoriasis and Psori-atic Arthritis Conferences have evolved to become the leading sci-entific meetings on psoriatic dis-ease. Unique in that the programme is based on surveys among the na-tional IFPA members, to ensure pa-tients’ perspective is represented, they also bring together the leading specialists from both dermatology and rheumatology active in the ar-ea of psoriatic disease, which makes the conferences a vital part in our continued work to improve the un-derstanding and care of people with psoriasis, all over the world.

Lars Ettarp, President of the International Federation of Psoriasis Associations, IFPA

‘When psoriasis is first diagnosed it is of great importance that patients are informed that the disease is not infectious – and that it is not a curse’

Dr Hoseah Waweru Vice-President of IFPA and Chairman of Psoriasis Association of KenyaPAGE 6

PSORIASIS 2ND EDITION, OCTOBER 2011

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The Conference is being held at an important time in the history of psoriasis – a disease known since Biblical times, says Dr Alan Ment-er, Chair of Dermatology at Bay-lor and Clinical Professor, Univer-sity of Texas Southwestern Medi-cal Center in Dallas and immediate Past President of the International Psoriasis Council.

“Signifi cant developments have occurred since the last conference in 2009, from both an understand-ing of the pathogenesis of the dis-ease as well as therapeutically,” says Dr Menter.

New developments“Psoriasis now has to be considered a systemic disorder – not just localised to the skin and/or the joints but with

signifi cant co-morbidities, just like rheumatoid arthritis and Crohn’s disease,which, like psoriatic disease, have a similar immunological pro-fi le and multiple co-morbidities.”

The recent understanding about how a new subset of T-cells (Th17) play a central role in the causation of psoriatic disease will allow for im-portant advances in therapy, adds Dr Menter. “The genetics of psoria-sis and psoriatic arthritis have al-so advanced signifi cantly over the past three years,” he notes.

Treatment and managementWith the newer understanding of the systemic nature of psoriatic dis-ease, multiple treatment modalities available for all aspects of psoriasis will be discussed, focusing on both current therapies now available worldwide as well as the new ther-apies under investigation. The need

for dermatologists and rheumatolo-gists to interact with other primary care givers and specialists, such as cardiologists, will be an important focus – right across the range of mild to more serious psoriatic disease, ex-plains Dr Menter.

Other keynote lectures will address the important association of system-ic infl ammation in psoriatic disease with implications for management and prevention of cardiovascular and infl ammatory bowel disease issues, which are seen more commonly in patients with psoriasis than in the general community. Another key fo-cus will be pharmacoeconomic con-siderations for both patients and care providers, with an emphasis on the availability and cost of the newer bio-logic injectable agents.

“The understanding and manage-ment of the full spectrum of psori-atic disease has reached a very excit-ing stage of evolution and it is hoped that this conference will allow all involved in improving the day-day quality of life of the psoriatic popula-tion worldwide the ability to imple-ment these advances for the benefi t of all,” adds Dr Menter.

Question: The 3rd World Psoriasis and Psoriatic Arthritis Conference is to be held next year. What are its aims and intentions?

Answer: From new developments to new, cross-disciplinary, approaches to management and treatment, the Conference offers exciting opportunities for progress

EMILY DAVIES

info.uk@mediaplanet.com

INSPIRING CHANGE

The importance of now

CAMPAIGNING FOR CHANGEThe IFPA’s executive committee are gearing up for the 2012 conference where they will be discussing the latest developments in psoriasis reasearchPHOTO: PROVIDED BY THE IFPA

Dr Alan MenterChair of Dermatology at Baylor, Clinical Professor at University of Texas Southwestern Medical Centre, and immediate Past President of the International Psoriasis Council

INSPIRATION

Topics to be discussed

1Stigmatisation; the con-stant need for treatment;

fear of adverse events from therapy; social, physical and mental impairment from ar-thritis, depression and other such co-morbidities; an in-creased risk for cardiovascular disease, type II diabetes and other significant disorders – all of this creates an immense dis-ease burden for psoriasis pa-tients. At the same time it de-mands major skills and experi-ence from the treating physi-cians, who have to take all of these into consideration.

Experts and patients

2The Conference presents the opportunity to discuss

all of this at the highest possi-ble level of both knowledge and experience.

IFPA has taken the initiative to produce a platform for scien-tific exchange - the topics for the conference were identified by surveys among psoriasis pa-tient organisations, and then translated into an inter-disci-plinary programme by derma-tologists and rheumatologists.

Overall aims

3Together, the conference should raise awareness,

inspire further research - and help patients to better control their disease and all aspects re-lated to it.

THE 3RD WORLD PSORIASIS AND PSORIATIC ARTHRITIS CONFERENCE 2012: ADVANCE KEYNOTES

Professor Dr Joerg C Prinz, Department of Dermatology, University of Munich

UNDERSTAND THE CONDITION

1STEP

6 · OCTOBER 2011 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

How everybody can be more empowered

CELEBRITIES SUFFER TOOClockwise from above: Caridee English, Kim Kardashian and LeAnn Rimes all suffer from psoriasisPHOTOS: PETER SVENSON,

FEATUREFLASH/SHUTTERSTOCK,

ANDREW F. KAZMIERSKI/SHUTTERSTOCK

“Regardless of where a patient lives, I believe that when you know about psoriasis treatments you know about hope - about the different possibili-ties you have to live a better life,” says Silvia Fernandez Barrio, Executive Director of psoriasis campaigning as-sociation AEPSO, in Buenos Aires, Ar-gentina and member of the IFPA Ex-ecutive Committee. “Knowing what treatments are available makes you fight for the right to get them. Know-ing about psoriasis gives you the tools to take better care of yourself.”

Location can have a powerful im-pact, however. “In most countries of Latin America all treatments are approved, but it is very difficult for the patients to be able to have them unless they pay full prices - which in the case of biologics, for example, it’s absolutely impossible for most people to afford. In Latin America, the average salary is less than $400

a month. How can somebody with moderate to severe psoriasis afford his treatment?”

Along with the universal chal-lenges of giving psoriasis greater visibility and raising awareness to avoid underdiagnosis and under-treatment, a particular problem in Latin America is the lack of an offi-cial register for patients with pso-riasis. “Without such numbers it is difficult to have public health poli-cies,” explains Silvia. “This is a tre-mendous challenge which we are trying to address with health au-thorities and medical groups. There is a long way to go!”

A lack of epidemiology is also a problem in Africa, points out Dr Ho-seah Waweru, Vice-President of IFPA and Chairman, Psoriasis Association of Kenya. Psoriasis is common in Af-rica, particularly Eastern Africa.

“It is difficult to give a true incidence

as we do not have properly conduct-ed studies and the commonly given prevalence figures of about 1 to 1.5 per cent have been based on hos-pital clinics,” he explains. “Having psoriasis in Africa presents several special difficulties. Some of the im-portant issues include having very few dermatologists - in Kenya, for example, with a population of more than 40 million people there are just about 30 skin specialists, hence proper diagnosis and treatment are frequently delayed.”

Lack of medications, low literacy levels and poor infrastructure make access to proper management very difficult. “Because of low literacy, superstition and delay in diagnos-ing psoriasis, patients also are often discrimininated against,” explains Dr Waweru. “In Africa, psoriasis has been confused for AIDS, leprosy, syphilis, leishmaniasis and fungal infections. When psoriasis is first diagnosed it is of great importance that patients are informed that the disease is not infectious - and that it is not a curse.”

EMILY DAVIES

info.uk@mediaplanet.com

Silvia Fernandez Barrio Executive Director AEPSO and member of the IFPA Executive Committee

NEWS

Question: Psoriasis is a common problem – globally. To what extent does patient experience vary across the world?

Answer: There is much shared experience globally but location can make a difference

Beyond drug treatment for psoriasis, there are several other treatment options to be considered, regardless of location.

See the lightPhototherapy, or light therapy,

is one such treatment. It involves exposing the skin to ultraviolet light on regular, frequent occa-sions, under medical supervision. One type of phototherapy is con-ducted with UVB rays. Another example is PUVA – like UVB, ul-traviolet light A (UVA) is present in sunlight. Unlike UVB, UVA is relatively ineffective unless used with a light-sensitizing medica-tion psoralen, which is adminis-tered topically or orally.

Location mattersAccessibility and availabili-

ty of treatment can be dramati-cally affected by where a patient lives. For instance, the mainstay of psoriasis treatment in Africa is mainly topical ointments such as steroids and coal tar, explains Dr Waweru. “Systemic drugs are al-so used but availability and cost may preclude widespread usage - most systemic medications for psoriasis are available with the exception of the biologicals. The use of the biologicals is preclud-ed by the high cost of the drugs and the increasing incidence of tuberculosis. Phototherapy is not widely available because of the cost of the light cubicles and bulbs. The other great disadvan-tage of phototherapy is that the patients have to be seen in hospi-tals on a regular interval.”

Dr Hoseah Waweru, Vice-President of IFPA and Chairman of Psoriasis Association of Kenya

TREATMENTS: GLOBAL OPTIONS

EMILY DAVIES

info.uk@mediaplanet.com

Exorex. It has been known to improve confidence.

Psoriasis may affect much more than the skin. It is a chronic, infl ammatory, painful, and disabling disease1 that can consider-ably impact a person’s physical and emo-tional wellbeing.2

The physical impact of psoriasis can vary from one individual to the next. For some, the condition is a mild nuisance; for others, the pain and itching caused by the skin le-sions can be disabling, interfering with ba-sic tasks such as dressing and walking, disturbing sleep, or impeding everyday life including work and personal relationships.2

In addition to skin symptoms, psoriasis may be associated with several co-morbidities, including other immune related conditions such as psoriatic arthritis (PsA) and Crohn’s disease.1 Psoriasis is also connected with an increased risk for other conditions in-cluding cardiovascular disease, diabetes, and cancer.1

Co-morbidities can place an additional bur-den on people with psoriasis. The symp-toms of PsA may include joint pain and swelling, back pain, fatigue and a reduced range of movement, potentially causing more ill-health and disability.3

Those suffering with psoriasis may fi nd the emotional impact of the disease just as de-bilitating as the physical symptoms. Many people living with the condition report feel-ing stigmatised as a result of other people’s reaction to their psoriasis.4 Others state that their psoriasis has affected their self-confi -dence and report feeling depressed as a result of their condition.5 In an international survey carried out in 2009, approximately two-thirds of people with psoriasis said that living with it affected their self-esteem.6

Treating and managing psoriasisPsoriasis treatments may help to ease or stop symptoms. Treatment choice is deter-mined by healthcare professionals and is dependant on whether the psoriasis is mild, moderate or severe, with treatment includ-ing topical therapies, phototherapy, system-ic medications and biologic therapy.

The physical and emotional symptoms of psoriasis may be best managed by ensur-ing that people with the condition are moni-tored and measured regularly and adjusting treatment when necessary. Clinicians can use the Psoriasis Area and Severity Index (PASI) or the Dermatology Life Quality In-dex (DLQI) questionnaires to assess the

severity of symptoms, and as a basis for discussing treatments and coping strate-gies to manage the disease.

For patients with associated co-morbidities, a multidisciplinary team of healthcare pro-fessionals including a GP, dermatologist, rheumatologist, or counsellor might be re-quired to manage all symptoms. Early rec-ognition of co-morbidities with subsequent implementation of strategies to modify life-style and cardiovascular risk factors may improve long term outcomes.7

Under the Spotlight is an international campaign that aims to raise awareness of the real life impact of psoriasis. Through a series of documentaries featuring people living with the condition, it highlights the ef-fects of psoriasis on an individual’s physi-cal and emotional wellbeing, their family life and their working life.

The intention of Under the Spotlight is to address potential misunderstandings about psoriasis and reduce the stigma associated

with it. The campaign, presented by The International Federation of Psoriasis As-sociations (IFPA) and supported by Abbott (a global healthcare company), launched in 2009 with the production of a website which to date includes more than forty short fi lms of individuals talking about their condition.

Lars Ettarp, President of IFPA, notes the importance of the campaign; “Under the Spotlight gives people living with psoriasis a voice with which to articulate the impact it has on their lives. IFPA is always striving to raise awareness and increase understand-ing of psoriasis. By showing real lives and helping to break down barriers to under-standing the disease we hope to help re-duce suffering and help people to live their lives the way they want to.”

The impact of psoriasis on physical and emotional wellbeing

National Psoriasis Foundation (US). Psoriasis and Comorbid Conditions Issue Brief. January 2011. 1. Available at: http://www.psoriasis.org/document.doc?id=410. Accessed October 2011.The Psoriasis Association (UK). Making Psoriasis a Priority; An Independent Report. 2. Available at: http://www.psoriasis-association.org.uk/pics/making-psoriasis.pdf. Accessed October 2011.National Psoriasis Foundation (US). Frequently asked questions about psoriatic arthritis. 3. Available at: http://www.psoriasis.org/psoriatic-arthritis/faqs. Accessed October 2011.Ginsburg IH & Link BG. Psychosocial consequences of rejection and stigma feelings in psoriasis patients. International Journal of Dermatology, 1993; 32(8):587-591.4. Weiss SC et al. Quantifying the harmful eff ect of psoriasis on health-related quality of life. Journal of the American Academy of Dermatology, 2002; 47(4): 512-518.5. Psoriasis Uncovered. 2009 Survey Results. Available at: 6. http://www.psoriasisuncovered.com/Content/Impact.aspx. Accessed October 2011.SIGN. Diagnosis and management of psoriasis and psoriatic arthritis in adults. A national clinical guideline. October 2010. 7. Available at: http://www.sign.ac.uk/pdf/sign121.pdf. Accessed October 2011. Date of Preparation: October 2011 • AXHUD111569

This article has been created by Abbott. Abbott had full editorial control of its content

and proudly supported by an educational

grant from Abbott, the global healthcare

company

The Under the Spotlight campaign

Revealing the real life

“Under the Spotlight gives people living with psoriasis a voice with which to articulate the impact it has on their lives.” Under the Spotlight is presented by

Many of IFPA’s 44 member asso-ciations around the world are launching the Under the Spot-light campaign at a national level. One such member is

PSALV – Psoriasis Scotland Arthritis Link Volunteers. We caught up with PSALV’s founder, Janice Johnson, about the Under the Spotlight campaign in Scotland.

What is the focus of Under the Spotlight in Scotland? At PSALV, we work particularly hard to support Scottish people with psoriasis and PsA. PSALV has this year held a briefi ng reception attended by 80 people, for Members of The Scottish Parliament

(MSPs) at Holyrood, to highlight the impact that psoriasis and PsA have on people in Scotland, and to call for individuals to be provided with appropriate treatment and support to manage their condition. At our charity’s display exhibit in the Members lobby, Holyrood, to mark World Psoriasis Day, we are today screening the Scottish Under the Spotlight patient documentaries, to reveal their aspirations, strengths and struggles, and to highlight the long-term impact psoriasis can have. Did you feature within the

documentary? I was fi lmed for the Under the Spotlight documentary earlier this year. My fi lm shares my own experiences, challenges and triumphs of living with psoriasis and PsA, and my work with PSALV. Since

psoriasis still has an extremely low profi le, I was keen to participate in the campaign to raise visibility and improve understanding of psoriasis and its co-morbidities. I hope that my video, alongside the others, will act as a source of advice, support, and information for others with the conditions. Has your involvement in the Under

the Spotlight campaign changed your approach to living with psoriasis? My involvement has only enhanced my desire to do more for people living with psoriasis and PsA. I hope that others will also be inspired to become involved in the campaign.

The Under the Spot-light campaign col-lates testimonials from people living with psoriasis from all over the world; af-fectionately referred to as ‘Spotlighters’.

Lydia Warner is one such individual from the UK.

Lydia, can you tell us about your experience of living with psoriasis? How has this changed over time?I was diagnosed with psoriasis and PsA in my twenties, at a time when I was thinking about starting a family. During my thirties, I had a number of fl are ups which often left me hospitalised. During this time I felt very isolated and I struggled to cope, I pushed people away and could never imagine a day when my condition wouldn’t hold me back.

Nowadays I cope very well, my psoriasis fl uctuates but with effective treatments and my family’s invaluable support, my symptoms don’t take over my life.

How do you cope with the symptoms of psoriasis?I have learnt my own limits and I work around them. I often try new treatments but overall my attitude has changed. I plan ahead a lot more so that my psoriasis doesn’t have the opportunity to hold me back. The support I receive gives me a little boost if I’m ever having a bad day.

Has your involvement with Under the Spotlight had an impact on your life?Under the Spotlight has allowed me to be more honest about my condition. It has shown my friends and family what I have truly gone through, which I probably

did not fully reveal at the time. Under the Spotlight has opened up a new channel of communication for us as well as opening the dialogue for me to engage with other patients in a similar situation.

What else do you feel Under the Spotlight can offer patients? Under the Spotlight offers patients a global support network that is accessible from the comfort of their own home. To know that someone else knows what you’re going through, even thousands of miles away, is a comforting thought.

Under the Spotlight at a national level

My psoriasis and me – the experience of a ‘Spotlighter’

impact of psoriasis over time

To view Janice’s, Lydia’s and other videos, or fi nd out more about the campaign, visit www.underthespotlight.com

To fi nd out more about PSALV, visit www.psoriasisscotland.org.uk

10 · OCTOBER 2011 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

“So many people with psoriasis ex-perience social stigmatisation and discrimination on a daily basis, in a wide range of settings - at school, at work, at the gym,” points out Bar-bra Bohannan, Director of Commu-nications at the IFPA.

“But there is no universal solu-tion to this universal problem,” she notes. “There have to be mul-ti-pronged approaches to come to grips with the misconceptions sur-rounding psoriasis. We need to in-fl uence policy makers and commu-nity leaders, so that they are made aware of the problems of stigmati-sation and discrimination in their communities, and we also need to reach the general public. Change must come both from the commu-nity - and the individual.”

Ongoing burdenFor Professor Peter van de Kerkhof of Radboud University Medical Centre

in the Netherlands, the persistent, chronic nature of the disease is “the most important challenge”. For many patients, there is no respite from their experience. “It also im-plies that patients may have a prob-lem after a long period of psoriasis – the fact that residual disease ac-tivity often remains is the reason behind the burden experienced by many patients,” he points out.

Which came first?The increased levels of stress, anx-iety, depression, and anger expe-rienced by patients with psoria-sis may be both caused by their

condition - and exacerbate it, says Dr Patrick Kemperman, dermatolo-gist at Erasmus MC University Med-ical Centre, Rotterdam. Crucially, he points out that the subjective expe-rience of psoriasis determine quali-ty of life scores more than the sever-ity and duration of illness do.

Looking aheadSo what’s the solution for the fu-ture? “First, the vulnerability of the psoriatic patient should be strengthened. Dealing day in and day out with misunderstanding is a major attack on a person’s vul-nerability and integrity - lack of understanding about psoriasis needs to be addressed.

“The dermatologist of the future will have broad knowledge on psy-chopathology and (anticipation of) social stress. They will be aware of irrational cognition and avoidance, able to initiate a conversation about

sexuality and will refer to specialised psychosocial support for complex problems. The psoriatic patient of the future suff ers no stigma - thanks to the positive impact of, for instance, social media - and has a strong coping mechanism due to early psychologi-cal intervention.

“Activities such as World Psoria-sis Day are immensely important, as it gives people with psoriasis a chance to be seen and heard on a global scale - and hopefully also un-derstood,” says Barbra Bohannan.

EMILY DAVIES

info.uk@mediaplanet.com

Question: Psoriasis can be truly devastating - it not only aff ects physical health but can have a severe impact on everyday life. What can be done?Answer: Raising awareness is of course vital — but there’s no quick fi x. To bring about real change, myths must be knocked down and positive infl uence maximised, based on truth and fact.

HOW TO FIGHT BACK

NEWS

BEAT THE STIGMA

2STEP

VIP HEALTH HOLIDAYS specialise in psoriasis

treatment holidays to the Dead Sea in Israel and Jordan

VIP have been organizing health holidays for over 30 years and we pride ourselves in off ering tailor-made holidays, ensuring every client receives the individual and specifi c attention needed to obtain the best results from their trip.

The Dead Sea, the lowest point of earth, off ers a unique combination of natural, geographical, historical and archeological phenomena, with year-round sunshine. The additional layer of the earth’s atmosphere at the Dead Sea fi lters out the more harmful ultra-violet rays, while the

less harmful rays tan, rather than burn, the skin, allowing you to achieve excellent results from this natural treatment. Low altitude, high air temperatures, low rainfall and dry pollen-free oxygen-rich air all contribute to a remarkable feeling of well-being. The Dead Sea is the most mineral-laden body of water in the world, containing 21 minerals including magnesium, calcium, bromine and potassium, providing a wide range of therapeutic benefi ts for skin conditions such as psoriasis and eczema, as well as muscular and respiratory problems.

For more information, visit our website www.viphealthholidays.co.uk or call Karen Michaels on 01923 850820.

VIP Health Holidays are a division of Peltours, part of Travelink Ltd.

Professor Peter van de Kerkhof Radbound University Medical Centre, Netherlands

Dr Patrick KempermanDermatologist,Erasmus MC University Medical Centre, Rotterdam

OCTOBER 2011 · 11AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

FIGHTING THE STIGMABarbra Bohannan discusses the many misconceptions about psoriasis, and why these need to changePHOTOS: PRIVATE

Help them talk - so we can take action!

IFPA’s current Stigmatisation and Discrimination Survey in-tends to assess and illustrate the impact that psoriasis has on those who have it, both in their public and private lives. The results will be presented at the 3rd World Psoriasis and Psoriatic Conference in Stock-holm next year.

The survey will gather the sto-ries of people with psoriasis from all over the world. It con-nects this year’s theme for World Psoriasis Day 2012: ‘Let’s talk about psoriasis – and take action’ with the theme for both World Psoriasis Day 2012 and the Conference: ‘Psoriasis – a global health challenge’.

TO FIND OUT MORE VISIT WWW.IFPA-PSO.ORG OR

FOR MORE INFORMATION ON PSORIASIS GO TO:

WWW.PSORIASIS-ASSOCIATION.ORG.UK

WWW. PSORIASIS-HELP.ORG.UK

WWW.PAPAA.ORG.UK

WWW.PSORIASISSCOTLAND.ORG.UK

EMILY DAVIES

info.uk@mediaplanet.com

12 · OCTOBER 2011 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

Know your number

MEASURING THE LEVEL OF SEVERITYIt is important not to simplify the PASI. Psoriasis in awkward or distressing areas can be classed as more severe than a larger covering, so it is important to always use the PASI in conjunction with the DLQIPHOTOS PROVIDED BY IFPA

All skin diseases can have a ma-jor impact on patients’ quality of lives - from psychological well-being to everyday activities and the ability to function at work and socially. Assessment of pa-tients’ quality of life has become an important endpoint in treat-ment and in clinical trials – ap-plying a measure, and monitor-ing this regularly, creates the op-portunity for better treatment.

Measuring upThe Psoriasis Area and Severity Index (PASI) is the internation-ally-used measure of overall pso-riasis severity and coverage. It is used in ongoing management to assess its progress, explains Pro-fessor Alex Anstey, consultant

dermatologist, at Aneurin Bevan Health Board, Newport, Wales.

Take everything into accountWhile PASI is highly useful, one po-tential problem lies in the danger of simplifi cation, notes Prof Anstey. “This means that a person with pso-riasis concentrated in particular-ly distressing areas – for instance, highly visible ones, on the hands or face, or in intimate areas such as the genital region – can be assessed as having a relatively low severity fac-tor due to its low coverage in terms of percentage of the body’s skin, but which belies the impact it may have on a patient’s quality of life due to its visible or intimate placing.”

For this reason, PASI is best used in conjunction with the Derma-tology Life Quality Index (DLQI), explains Prof Anstey. The DLQI is

routinely used in clinics in order to assist the consultation, evalu-ation and decision-making proc-ess – used in tandem with PASI, it off ers a more accurate picture of a patient’s circumstances.

Making time for itDue to National Institute of Clinical Excellence’s (NICE) requirements on the necessity of a certain PASI threshold for the prescription of bi-ologic treatment, PASI is currently most used by clinicians who pre-scribe such treatments. It is, how-ever, also used very effi ciently by nurse specialists, who are often able to perform it quickly. While it can often be diffi cult to fi nd time to fi t it into clinic time during a busy NHS clinic, clinicians are getting better at performing it, says Prof Anstey: with practice they become more effi cient and its performance is in-corporated into consultations more easily. “The hope is that, in time, even more clinicians will become adept at using PASI,” he explains.

EMILY DAVIES

info.uk@mediaplanet.com

Professor Alex AnsteyConsultant Dermatologist, Aneurin Bevan Health Board

NEWS

Question: How can an individual patient’s psoriasis be assessed, and why is it so important?

Answer: Understanding the degree of severity using a formal, universally recognised measure can enable better management and treatment

What is the significance of PASI and DLQI?

!Both provide a clearer and more individual picture

of a patient’s psoriasis.

Measuring severityPASI combines the assessment of the severity of lesions and the area affected into a sin-gle score from 0 (no disease) to a maximum severity of 72. The scoring comprises assess-ing four sections: (head – 10 per cent of a person’s skin); arms (20 per cent); trunk (30 per cent) and legs (40 per cent). Each of these areas is scored individually and then the four scores combined to produce the final PASI. In addition, the percentage of area of skin in-volved is estimated and then transformed into a grade from 0 to 6.

Regular checksTypically, the PASI would be cal-culated before, during and after a treatment period in order to de-termine how well psoriasis re-sponds to the treatment under test (a lower PASI means less pso-riasis, generally). It is conducted in clinic and, with practice, can be done quickly by a nurse spe-cialist or doctor.

Quality of lifeDLQI is a simple 10-question validated questionnaire which has been used in 33 different skin conditions in 32 countries and is available in 55 languag-es. Its use has been described in over 500 publications in-cluding 30 multinational stud-ies. The DLQI developed in 1994, was the first dermatolo-gy-specific Quality of Life in-strument. At present the DL-QI is the most frequently used instrument in studies of ran-domised controlled trials in dermatology.

ASSESSING PSORIASIS

EMILY DAVIES

info.uk@mediaplanet.com

GET MEASURED

3STEP

Living with psoriasis?

Get informed and

take control todayDon’t suff er in silence! Get informed about the severity of your psoriasis and work with your doctor to

take control of your disease.

Psoriasis can be a painful and debilitating disease involving red, raised and infl amed patches on the skin. It is

estimated that 2‐3% of the population in the UK and Ireland have psoriasis.1

The most common form of psoriasis is called plaque psoriasis, where aff ected skin is covered by silvery scales

known as plaques. These often itch or feel sore, and cases of psoriasis range from mild to moderate to severe.1

Mild Only a few patches, less than

3% of the skin surface 2

Moderate

3% to 10% of the skin surface 2

Severe More than 10% of the skin

surface 2

Physical, emotional and social eff ects As well as being physically debilitating, psoriasis can have a deep psychological impact on the people it aff ects.3 People with psoriasis may feel more self-conscious, especially if it aff ects places which can be seen by others, such as the hands or face.

In addition, psoriasis may be associated with a higher risk of other serious conditions such as heart disease and diabetes.4

Do you know the severity of your psoriasis? When it comes to fi nding the right treatment plan, there are lots of options available to help keep the symptoms of psoriasis under control.

It’s important for you and your doctor to work out the severity of your psoriasis.

This can be done using the Psoriasis Area and Severity Index (PASI), which is an eff ective and commonly‐used test to measure psoriasis severity.5

Why is it vital to measure your PASI score & how can it help you? The British Association of Dermatologists recommends that people with psoriasis should have the extent, location and severity of their disease assessed.6 Measuring your PASI score means that you and your doctor have a clear indication of how bad your psoriasis is. This will help determine which treatment you should receive, and changes in your score will help work out whether your treatment is working or not.

Please note, the PASI only takes into account the physical impact of psoriasis. However,

psoriasis is more than just a physical disease. Psoriasis can be considered severe if it has a profound psychological eff ect, such as when it has a signifi cant impact on a person’s quality of life. To assess the impact of psoriasis on your quality of life, the Dermatology Life Quality Index (DLQI) is recommended.

How does the PASI work? The PASI takes into account how bad your psoriasis plaques are (i.e. how thick, or red and sore they are) and how much of your body is aff ected, to come up with a score. The score is given as a number from 0 (not aff ected at all) to 72 (very severely aff ected). If your PASI score is more than 10 your disease is classed as moderate to severe.

1 The Psoriasis Association. Available at: www.psoriasis‐association.org.uk Accessed on 8 September 2011. 2 US National Psoriasis Foundation. Available at www.psoriasis.org/about-psoriasis/treatments/severity. Accessed on 6 October 2011.3 Dubertret L et al. European patient perspectives on the impact of psoriasis: the EUROPSO patient membership survey. British Journal of Dermatology. 2006:155:729‐736. 4 Davidovici B et al. Psoriasis and systemic infl ammatory diseases: potential mechanistic links between skin disease and co‐morbid conditions. Journal of Investigative Dermatology.

2010;130(7):1785‐96. 5 Mrowietz U et al. Defi nition of treatment goals for moderate to severe psoriasis: A European consensus. Archives of Dermatological Research. 2011;303:1–10. 6 British Association of Dermatologists and Primary Care Dermatology Society. Recommendations for the initial management of psoriasis. Skin. 2009;39:395–97.

Join the conversation

You can follow Psoriasis 360 on Facebook and Twitter

Join The Psoriasis Association, www.psoriasis‐association.org.uk, where you will fi nd advice and support about living with psoriasis

Visit www.psoriasis360.com for a simple three step approach to

managing your psoriasis:

1 Calculate the severity

Download an interactive PASI Calculator (available as an

iPhone/iPad App or PC tool) that provides a step‐by‐step

process for calculating your PASI score

www.psoriasis360.com/about‐psoriasis/severity

2Treatment options

Find out about the treatment options available to you and

make sure you are getting the right treatment for

your severity

3 Talk to your doctor

Get access to tips on how to talk to your doctor about

your psoriasis

So, what should you do next?

UK/NPR/2011/0134

October 2011

Created by Janssen for people with psoriasis,

www.psoriasis360.com

is a comprehensive source of information

about psoriasis

123

14 · OCTOBER 2011 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET

As with most peo-ple with psoria-sis, my journey has been rath-er lonely and de-pressing – fre-quently leaving

me feeling disenfranchised from society, my friends and my fami-ly. Knowing that psoriasis has no cure, upon receiving my diagnosis I started to question a lot of things about myself, my health and pso-riasis - starting with – why me? It began with a small patch of stub-born dandruff that never went away. A few years later, the flakes began to cover my neck and arms, spreading fast to encompass my entire body.

Feeling lostI did not know anyone with this disease. I felt so alone - and I shunned the world around me, in-cluding my own family - who kept on advising me to try so many things in an effort to help. They were as lost as I was - and I didn’t want to burden them with this helplessness. Instead, I went from doctor to doctor in search of the best remedy.

Getting involvedTen years ago, my dermatologist Dr Vermen Verallo-Rowell, who is probably my twelfth doctor, sug-gested that I begin a campaign of advocacy by getting involved in the community. After four years of persuasion, I gave in and started the community that today is Psor-Phil, in 2005. It aims to provide a source of support, information and advice for people with pso-riasis, and to raise understanding and awareness about psoriasis for the world at large.

The rest is history. I began my work with PsorPhil by search-ing for every single Filipino pso-riasis sufferer online, leaving my contact numbers on various sites

for them to call me back. Initially, there were just five of us - includ-ing the nurse who was taking care of me at the clinic. Now, there are many, many more, including a strong online community.

Life-changing experienceWhat impact has psoriasis had on my life? In essence, psoriasis has turned my life upside down. When it first occurred, I was on top of my professional career as a young sales and marketing director of a huge company - when psoriasis took over my life and pushed me to isolation and depression. I was forced to resign and start another career that would not require me to do presentations or appear be-fore a crowd, that would not place me in situations where my pso-riasis would be visible and have the potential to cause humilia-tion. In addition to this, since di-agnosis my social life has been se-riously affected - as I withdrew from society, and eventually lost my friends.

Learning to live with itHow do I limit its impact on my life? Over the years, I have learned to accept that psoriasis is going to be a part of my life forever. As a re-sult, I have decided that the best thing to do is to learn to realign my goals and make adjustments along the way. What I am trying to do is make myself useful by serving other patients who like me have to pass through all the difficult emo-tions I have, and help them try to accept their conditions. I have been an active advocate for pso-riasis for the last six years. Dur-ing this journey my advocacy and campaigning has brought me to the doorsteps of people I never im-agined I would meet.

The importance of hopeThere are several key things to know about the physical and

The story of my success

Josef de Guzman, President and CEO of the psoriasis charity PsorPhil in the Philippines and member of the IFPA Executive Committee, overcame the difficulties of his personal diagnosis of psoriasis to fight back and help others

psychological experience of living with psoriasis - both for those with it and for those who do not have it.Most importantly of all, it is vital to maintain a sense of hope. Liv-ing with psoriasis is undoubtedly tough - but we have a choice to be-come even tougher. It’s important for people to realise just how hard living with psoriasis is and that adding to this burden by discrimi-nating against a person with pso-riasis is extremely distressing.

Squashing the mythsTo those people who do not have psoriasis, we don’t ask for sym-pathy but rather a simple under-standing and a recognition that we too are human beings just like them. It just happens that we carry a condition which we never expect-ed nor wanted to have. And, crucial-ly - psoriasis is absolutely not con-tagious. Please do not discriminate against us – this is my plea!

A personal diseaseMy advice to other people with psoriasis, and the strategy that I would suggest may help them to cope, is multilayered. Firstly – how-ever tempting it may be, absolute-ly do not self-medicate. Psoriasis is a very personal disease, and what works for others may not necessar-ily work for you. Always see your doctor first and ask him or her if you can try certain treatments that you have read about or heard about from another source.

Self-medicating is where trou-ble starts for most of us: when we give up hope and start taking the decision for treatment and medi-cation into our own hands – as a result of doing so, people often end up in a more aggravated and miserable condition than that which they had in the first place. And lastly, but definitely not least – never give up hope! We can still make a difference even – especial-ly - if we have psoriasis.

‘My advocacy and campaigning has brought me to the doorsteps of people I never imagined I would meet’

INSPIRING OTHERS

PERSONAL INSIGHT

MAKING A DIFFERENCEDe Guzman with colleagues at various dermatology and psoriasis congress meetings throughout his careerPHOTOS: PRIVATE

BY PSORIASIS?HAVE YOU BEEN TOUCHED

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Date of preparation: October 2011 : CEL/438/10-11/10-13

World Psoriasis Day is presented by IFPA, the International Federation of Psoriasis Associations

IFPA, the International Federation of Psoriasis Associations, continues to lead the way in supporting patients with psoriatic diseases and their carers worldwide.

Celgene congratulates IFPA on World Psoriasis Day 2011.

Celgene is dedicated to helping patients with psoriatic diseases through development of novel therapies