Global challenge Why now is the time to act Social impact How skin camouflage can ease suffering Treatment options Could phototherapy work for you? AN INDEPENDENT SUPPLEMENT DISTRIBUTED WITHIN THE GUARDIAN ON BEHALF OF MEDIAPLANET WHO TAKE SOLE RESPONSIBILITY FOR ITS CONTENTS PHOTO: SHUTTERSTOCK PSORIASIS IS A GLOBAL HEALTH CHALLENGE PUT PSORIASIS ON THE AGENDA NOW! COME TOGETHER TO FIGHT An optimistic outlook: We are standing on the edge of new knowledge and new therapies for those living with psoriasis PSORIASIS TODAY SHOW YOUR SUPPORT WORLD PSORIASIS DAY
Transcript
Global challenge Why now is the time to act
Social impact How skin camoufl age can ease suffering
Treatment options Could phototherapy work for you?
AN INDEPENDENT SUPPLEMENT DISTRIBUTED WITHIN THE GUARDIAN ON BEHALF OF MEDIAPLANET WHO TAKE SOLE RESPONSIBILITY FOR ITS CONTENTS
PHOTO: SHUTTERSTOCK
PSORIASIS IS A GLOBAL HEALTH CHALLENGEPUT PSORIASIS ON THE AGENDA NOW!
COME TOGETHER TO FIGHT
An optimistic outlook: We are standing on the edge of new knowledge and new therapies for those living with psoriasis
PSORIASISTODAY
SHOW YOUR SUPPORT
WORLD PSORIASIS DAY
2 · OCTOBER 2012 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET
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Today marks World Psoriasis Day, an annual event dedicated to improving the lives of those with psoriasis.
Psoriasis is a chron-ic skin condition where the skin ac-celerates its usu-al renewal process from weeks to just days. This results in
red, scaly patches which can be in-fl amed, itchy and painful. It can oc-cur at any stage of life, is indiff erent of race and gender, and can cause damaging physical and emotional eff ects on those living with it.
It is estimated psoriasis aff ects around 2 per cent of the population within the UK, and the eff ects of the skin disease can range from minor irritation to a life-threatening dis-ease. The visual nature of psoriasis can cause self-consciousness for those living with the condition, on top of the physical discomfort and even pain of the skin disorder.
Personal insightKara Hooper, who has suff ered from psoriasis all her life, has
set up a blog ‘Living with Psoriasis’ as she is determined to share her story and show that psoriasis can be a
life-changing condition. At 21 years old, Kara would like to be a carefree young girl, looking forward to going out with her friends and meeting new people. Instead she is constantly reminded of her condition and spends most of her days covered from head to toe. “It is arduous, tedious and in some situations, emotionally crippling,” she says. “There have been so many times that I’ve felt to-tally defeated by psoriasis and at a loss for what to do. I want to stop sit-ting back and take control by actually doing something about it.”
Finding the right supportOnline platforms and profes-sional associations can provide
support to people with psoriasis, creating places to communicate with one another and share tips and advice on how to cope with the con-dition. Although there is currently no cure for psoriasis, there are a va-riety of treatments available to alle-viate the symptoms and appear-ance of the disorder such as topical creams and ointments. In more se-vere cases, oral medication or even phototherapy, where UV light is ap-plied to the skin in a controlled en-vironment, can be used.
With the initiative of people with psoriasis like Kara, and fund-ing of research into the skin dis-ease by charities and organisa-tions such as the British Skin Foundation and the International Federation for Psoriasis Associations (IFPA), we can work together to-wards easing the pain of those liv-ing with psoriasis. It is paramount that awareness events such as to-day allow us to continue our work to learn as much as possible about the skin disease if we are to achieve our aim of fi nding a cure for the mil-lions of people living with psoriasis.
Matthew PateyChief Executive, British Skin Foundation
‘Skin camoufl age is a simple solution to a complex problem’
Elizabeth AllenChief trainer, British Association of Skin Camoufl age and has lived with psoriasis for 36 yearsPAGE 7
PSORIASIS, 5TH EDITION, OCTOBER 2012
Managing Director: Chris EmbersonEditorial and Production Manager: Faye GodfreyBusiness Development Manager: Dominic Webber
Responsible for this issueProject Manager: Fred GwatkinPhone: 020 7665 4410E-mail: [email protected]
Distributed with: The GuardianPrint: The Guardian Print Centre
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 19 October 2012. 2 US National Psoriasis Foundation. Available at www.psoriasis.org/about-psoriasis/treatments/severity Accessed on 19 October 2012.3 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 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/UTK/2012/026i October 2012
Created by Janssen for people with psoriasis,
www.psoriasis360.com
is a comprehensive source of information
about psoriasis
123
4 · OCTOBER 2012 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET
■ Since the fi rst World Conference in 2006, the conference has gone from strength to strength: today, it is the leading meeting place for experts and advocates of psoriasis to convene on the condition and the latest developments that are constantly evolving. The con-dition varies greatly throughout the world — thus, the conference off ers a vi-tal opportunity to discuss how care and treatment can be made available to eve-ryone internationally.
The general feeling of the conference was optimistic; we are standing on the edge of new knowledge, new therapies and increased international cooperation.
Can diet affect psoriasis?“We are all unique, so listen to your body,” was the message from Anja Na-slund, a health educationalist who has worked with the Swedish Psoriasis As-sociation. During her conference lec-ture, Naslund stated unequivocally that physical activity and a good diet clear-ly aff ects health — while supplements
are not necessary if you consume a balanced diet, including adequate amounts of oily fi sh, meat, vegetables, fruit, eggs and fi ber.
For vitamin D, zinc and selenium, which are some of the most important vitamins and minerals for strength-ening the immune system, Naslund recommends a good mix of vegetables (a minimum of 500 grams per day), fi sh at least three days a week and blueberries, raspberries and cranber-ries. The latter contains antioxidants which have an anti-infl ammatory ef-fect; both milk and wheat can create micro-inflammations and humans with various allergies and chronic dis-eases always need to keep an eye on what they eat. Naslund recommends that everyone have at least 45 minutes of physical activity a day.
Depression and psoriasisDr Alexa Kimball, Senior VP of the Mas-sachusetts General Physicians Organi-sation, Vice Chair of the Department of
Dermatology and Director of the Clini-cal Unit for research trials in skin, also lectured, on depression and anxiety as a side eff ect of psoriasis. Several stud-ies have shown that people with psori-asis are a quarter to a third times more likely to become depressed in their life-time than those without, she noted. In-creased screening, therapy and inter-national cooperation is needed to im-prove psychosocial eff ects of chron-ic diseases in the future, says Kimball. According to Kimball, a study showed that out of a group of psoriasis patients with depression, half of them were no longer depressed after just twelve weeks of structured therapy.
Dr Kimball’s conclusion was that psori-asis is a widespread and complex disease — and only through increased research, care and knowledge can we achieve bet-ter treatments and awareness of what it actually means to have psoriasis.
Question: What was the signifi cance of the 3rd World Psoriasis and Psoriatic Arthritis Conference, arranged by IFPA in Stockholm this summer? Answer: Over 1,200 dermatologists, rheumatologists and patients’ representatives from 67 countries met to discuss the challenges of psoriasis.
INSPIRATION
MORE THAN 125 MILLION PEOPLE SUFFER FROM PSORIASIS ALL OVER THE WORLD. PUT PSORIASIS ON THE AGENDA NOW! - JOIN OUR PHOTO CAMPAIGN ON WWW.WORLDPSORIASISDAY.COM
World Psoriasis Day and the “Put psoriasis on the agenda now!”-campaign are presented by
An era of new knowledge
OCTOBER 2012 · 5AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET
COME TOGETHEROver 1,200 dermatologists, rheumatologists and patients’ representatives from 67 countries attended the conference this yearPHOTOS: PROVIDED BY IFPA
Psoriasis needs to be on all public health policy agendas — locally, nationally and globally. This campaign is one of many steps taken by IFPA in order to have pso-riasis recognised by the World Health Organisation (WHO), as well as by na-tional health authorities, as the serious and often disabling disease that it is.
Worldwide, there is often a lack of cor-rect diagnosis of psoriasis, a lack of ac-cess to healthcare and treatments, and a lack of understanding of its true nature. That is why we need the recognition by, and support of, WHO: active measures can then be taken to include psoriasis in public health campaigns and health-care agendas.
More support than ever neededObserving World Psoriasis Day is one of the most public ways in which we can all show our support for the global psoria-sis community, and we hope that more people in more countries than ever will join us this year in our efforts to raise
awareness. In 2013 IFPA will continue the strategic work with gaining recog-nition for psoriasis and World Psoriasis Day, and will also focus on the impor-tance of ensuring access to treatment for all people with psoriasis, wherever they may live.
Better access to better treatmentPsoriasis is disabling, not only physically but also socially and economically. Many people with psoriasis have to endure both stigmatisation and discrimina-tion daily, adding to the many challeng-es they already face, and treatment is of-ten both costly and time-consuming. Ac-cess to efficient and cost-effective treat-ments would lessen the burden, both on the individual and on the community, and this must be prioritised by IFPA and all who care about those with psoriasis.
■ Help us put psoriasis on the agenda now by taking part in IFPA’s global World Psoriasis Day photo campaign. See the back cover of this supplement for more information.
Lars EttarpPresident, IFPA
Offering support to psoriasis community
■ Question: What is the key message of World Psoriasis Day for 2012?
■ Answer: Under the theme, Psoriasis – a global health challenge, IFPA has initiated a global photo campaign around our core message: “Put psoriasis on the agenda now!” says Lars Ettarp, IFPA’s president.
LARS ETTARP
President, IFPA
6 · OCTOBER 2012 AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET
■ Question: What is most important to know about phototherapy treatment for psoriasis?
■ Answer: The benefits are many, and can be long-lasting – but it is important to know what will suit your skin best.
Phototherapy treatment with ultra-violet light is used for the treatment of many skin diseases including psoriasis, explains Dr Mike Ardern-Jones, senior lecturer and consult-ant dermatologist at the University
of Southampton School of Medicine. “Two types are routinely availa-
ble: Ultraviolet B (UVB) light alone or UVA light with Psoralen medication (PUVA),” says Dr Ardern-Jones. “Nar-row band UVB bulbs emit only the most effective part of the UVB spec-trum for psoriasis and are now the most widely used form of photother-apy in the UK.”
Efficient and effective“UV treatment of psoriasis is use-ful because it is effective, well-tol-erated, can treat large areas, and can provide long-lasting benefits. The UV cabinet is similar to a sun-bed but is usually designed vertical-ly to allow treatment standing up, and a typical course would involve three UVB treatments per week for ten weeks with gradually increasing
exposure time. High street sunbeds are inefficient for treating psoria-sis because they emit the wrong UV wavelengths,” says Dr Ardern-Jones.
Short-term possible side-effects of phototherapy include itching, burns, rash, worsening of disease, pigmentation, freckling and cold sores, he adds. “Longer-term prob-lems include premature skin age-ing and an increased risk of skin can-cer which is minimal to start with but increases proportional to the number of treatments. Photothera-py units keep detailed records of the cumulative total of treatment doses to ensure recommended safe upper limits are not exceeded.”
Know what works for youUV treatment is not ideal for those who sunburn very easily, or those
who have an increased risk of skin cancer, such as a previous skin can-cer or treatment with immuno-suppressive medications. In addi-tion, UV treatment can flare some other diseases such as systemic lupus and rosacea. Oral PUVA can cause nausea and is not recom-mended in pregnancy, or with se-vere liver or renal disease. During treatment, eye protection is man-datory to prevent the risk of cata-ract formation.
In some European countries home phototherapy units are used. Although these can be costly, they are useful for people in areas where frequent trips to clinical photo-therapy units are more difficult.
NEWS
SEE THE LIGHTDr Mike Ardern-Jones discusses phototherapy as a treatment for psoriasisPHOTOS: PROVIDED BY IFPA
Dr Mike Ardern-Jones,Senior lecturer and consultant dermatologist, University of Southampton School of Medicine
OCTOBER 2012 · 7AN INDEPENDENT SUPPLEMENT BY MEDIAPLANET
“I developed psoriasis in the autumn of 1976 — that summer was one of the hottest on record. I was in a se-cure relationship, my husband and I had a beautiful 4-year-old daughter and life was in the slow lane.
“I went to see a dermatologist: his first question was “Anyone in your family with this?” followed by “Have you been recently ill?” My re-sponses were “No” and “Yes — sun-stroke”. I would later appreciate how apt those questions were.
What does help?“Treatments ranged from wrap-ping up like an Egyptian mum-my with foul-smelling ointment to trying holistic remedies. Noth-ing made much difference. “Learn to live with it, not for it,” the der-matologist advised, so I just got on with life. A subsequent visit to
another dermatologist confirmed that the trigger might have been the sunstroke. Our daughter, now 40, developed psoriasis at 16; fin-gers are crossed for our grand-daughter. Psoriasis is hereditary, and cannot be acquired — nor is it infectious.
“My interest grew in skin cam-ouflage once I developed psoria-sis, though as I originally trained as a theatrical make-up artist I was used to such products. I was trained by the founder of the British Asso-ciation of Skin Camouflage, Joyce
Allsworth, and today am their chief trainer. Skin camouflage works over psoriasis but the obvi-ous “do not scratch” has to be com-plied with. Skin camouflage can-not affect skin’s form or function, so the plaques will still be there but are less noticeable as they appear
skin-coloured instead of either sil-very white or erythemous (red).
Lifting the burden“Skin camouflage is a simple solu-tion to a complex problem — it helps to alleviate the psychological, physi-cal and social effects that an altered image can have on people’s lives.
“Skin conditions can be psycholog-ically devastating to anyone: studies show that up to a third of patients re-port psychological distress including isolation and verbal abuse. Many suf-fer in silence: patients may refrain from consulting their doctor, believ-ing their condition will be dismissed as cosmetic. There are five brands of skin camouflage available on NHS prescription — these and others can be obtained at retail too.
“There is no cure, only manage-ment. For me there is respite during winter and I experience outbreaks during summer; I have got on with my life, but I do so wish that I had a pound for every time I am asked what the red-scaly patches on my elbows and back of hands are: I’d be a millionaire!”
■ Question: What role has skin camouflage played in one woman’s management of psoriasis?
■ Answer: For Elizabeth Allen it has made all the difference to her quality of life — here, she shares her experience.
Elizabeth AllenChief trainer, British Association of Skin Camouflage and has lived with psoriasis for 36 years
A simple solution to a complex problem
GREAT RESULTS: Elizabeth Allen uses skin camouflage to make her psoriasis less visible, which she says helps to alleviate the psychological and social effects it can have on people’s lives PHOTOS: PRIVATE
AFTER
Put psoriasis on the agenda now!
More than 125 million people all over the world have psoriasis. Many of them suffer needlessly, due to lack of understanding, lack of correct diagnosis and lack of treatment. Psoriasis needs to be put on the global and national health agendas now!
Join our global campaign by taking a photo of yourself holding the bubble above and sending it to [email protected], with your city and country as the subject line. Your photo will be immediately uploaded to the official World Psoriasis Day website, www.worldpsoriasisday.com., and may also be used in IFPA’s campaign materials. Thank you for your support!
