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Improving awareness of the impact of psoriasis on lifestyle.

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Psoriasis Awareness Week (the third week of May 2004) is an established annual event in the Psoriasis Association’s diary. Its purpose is to let people know about psoriasis and the effect it can have on people’s lives. This year the week is promoting the message of being positive about psoriasis and aims to reach a wider audience - not solely those who have the condition.

Abstract

VOL: 100, ISSUE: 20, PAGE NO: 30

Gladys Edwards, BA, DASS, is chief executive, The Psoriasis Association.

 

Psoriasis Awareness Week (the third week of May 2004) is an established annual event in the Psoriasis Association’s diary. Its purpose is to let people know about psoriasis and the effect it can have on people’s lives. This year the week is promoting the message of being positive about psoriasis and aims to reach a wider audience - not solely those who have the condition.

 

 

Psoriasis
Having a skin disease is not just a complaint, it is a way of life - day in, day out, from morning until night with no cure (All Party Parliamentary Group on Skin, 2003). It has been said of psoriasis that it may not kill you but it certainly stops you living. It is a common, chronic, and complex condition that can present in different ways. It can occur on any part of the body, at any age, and affects approximately two per cent of the population (Penzer and Mitchell, 2000). In addition, psoriasis tends to come and go and there may be considerable variations in intensity. Skin involvement can vary from a few psoriatic patches to widespread and serious eruption. Many people with psoriasis have small patches that either improve spontaneously or need very little treatment, and the most severe forms, which are more rare, can demand intensive treatment and nursing care (The Psoriasis Association, 2004).

 

 

Psoriasis is neither infectious nor contagious. It is not curable but treatments are available to help manage the condition. Psoriasis is simply a vast acceleration of the usual replacement processes of the skin. Normally a skin cell matures in 21 to 40 days during its passage to the surface where a constant invisible shedding of dead cells as scales takes place (Penzer and Mitchell, 2000). Psoriatic cells, however, are believed to turn over in two to three days and in such chaotic profusion that even live cells reach the surface and accumulate with the dead cells in visible layers. It appears as raised red patches of skin covered with silvery scales. Although it can occur on any part of the body - elbows, knees, and the scalp are usual sites.

 

 

There are different types of the condition:

 

 

- Psoriasis that appears in the flexural areas - for example, the groin and genital area as well as under the breasts - tends to look red and shiny rather than scaly;

 

 

- Guttate psoriasis looks like a widespread rash of small spots and may follow a streptococcal throat infection;

 

 

- Pustular psoriasis is characterised by small round yellow pustules on the hands and/or feet;

 

 

- Two rare kinds of psoriasis that are medical emergencies and necessitate hospital admission are generalised pustular psoriasis and erythrodermic psoriasis.

 

 

Treatment and management
Many people with psoriasis manage their condition without consulting a nurse or doctor. However, there is a range of topical treatments, ointments, lotions, and creams available on prescription (Box 1). These range from the tar-based products - around since the 19th century - to the more recent vitamin D-based ointments, which are cleaner and easy to apply. However, there have not been major advances in treatment for psoriasis.

 

 

For moderate to severe psoriasis a referral to secondary care is appropriate for consideration for systemic treatments such as methotrexate, cyclosporin, and acitretin. These medications need frequent monitoring and follow-up due to potential side-effects. The other major second-line treatment available in hospital is light narrow band UVB treatment.

 

 

Despite the positive effect these medications can have on psoriasis some patients will choose never to take these drugs no matter how severe their psoriasis.

 

 

A range of as yet unlicensed drugs is on the horizon. Many people are looking forward to using these treatments as they herald the first really new developments in the treatment of psoriasis. However, cost may well be a factor in their use.

 

 

Living with psoriasis
Surveys within the last two years have revealed the impact that living with psoriasis can have. It is clear psoriasis causes a high degree of emotional impact - 77 per cent of respondents to the 2002 survey (The Psoriasis Association, 2002) felt their psoriasis had led to a lack of self-confidence and a similar percentage felt it had caused emotional distress or anxiety. Significant numbers (19 per cent) had sought help from their GP specifically for emotional distress and a further 11 per cent had sought counselling support.

 

 

While many people with psoriasis do not allow their condition to interfere with everyday life there are clearly situations that are particularly difficult. For example, formal occasions where dark clothes are the norm are stressful. In addition fear of exposing the psoriasis during sport or in the summer can restrict activities.

 

 

The Psoriasis Association’s survey revealed:

 

 

- 40 per cent of respondents had seen a dermatologist in the last two years;

 

 

- 25 per cent had not seen any health professional at all within the last two years;

 

 

- Just over one-quarter reported a year or more between their last two visits.

 

 

People with psoriasis are often managing treatment regimens that demand time and commitment. Such regimens can be smelly and messy and may have unwanted side-effects. They may also require hospital appointments necessitating time out of work several times a week for several weeks.

 

 

Awareness week
Managing psoriasis on a daily basis can be difficult. However, the chosen theme for this year’s awareness week is encouraging people to be positive about living with the condition.

 

 

This is because meeting people with psoriasis demonstrates that many are simply carrying on with their lives. Some express regret that psoriasis has somehow limited or inhibited their social or work activities and The Psoriasis Association believes it is important to encourage people to do whatever they want to do.

 

 

This message is not aimed solely at those who have psoriasis and it is most definitely not an exhortation to those people to ‘pull themselves together’. People with psoriasis do not live in isolation - they are part of a community of friends, family, colleagues, and health professionals. The message is aimed at everyone. Family and friends are in a position to offer positive encouragement on a daily basis (Box 2).

 

 

Nurses should be aware of the problems people with psoriasis face - hurtful comments, having to negotiate time out with employers, and so on - and should be prepared to offer support. People who work in leisure centres or swimming pools must be aware that psoriasis should not stop someone swimming. Hairdressers should be sensitive to the needs of people with scalp psoriasis.

 

 

Conclusion
The theme of this year’s Psoriasis Awareness Week, ‘Being Positive about Psoriasis’, does not intend to diminish the experience of those people who are having a really difficult time managing their skin condition. It aims to promote a balanced view of living with psoriasis and to change the views of those who feel that psoriasis is somehow dirty, and that it imprisons people and stops them from doing things.

 

 

Nurses in all areas of practice can inform people about psoriasis, dispel some of the myths that surround it, and support their patients in the control and management of their condition.

 

 

This article has been double-blind peer-reviewed.

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