Sunday October 26, 2008

More than skin deep

By LIM WEY WEN

The signs of psoriasis may only be seen on the surface, but its burden is felt deep down by those who live with it.

OFTEN unexpectedly, psoriasis makes its entrance into people’s lives through various ways. Some experience it first as dandruff with big flakes along with itching and burning on their scalps. Some come face-to-face with red patches covering parts of their body after a bout of intense stress at work, or after an infection.

Dr Allan Yee Kim Chye ... The prevalence of psoriasis is not as high as acne or atopic eczema, but the disease burden is still substantial.

For Mary (not her real name), it began with a seemingly harmless fall. “I was running around my house when I fell and injured myself. A huge part of the skin around my arms was scraped off. Somehow it took a very long time to heal. Plus, the skin around that area began to look scaly and rough. After some time, it began to spread to other areas.

“I went to the doctor and he diagnosed me with psoriasis. My playmates started to ask me ‘what’s that?’ and made fun by calling me all sorts of names. To avoid too many questions I just started to wear long sleeves all the time since then,” she said.

As Mary is the first member in her family to experience such symptoms, her family supported her by going to different places across the globe to find a cure for it.

“I started off with the modern medication of steroids and UV light treatment. It did help to contain it at first, but somehow after some time, they stopped working. Now I’m turning to alternative medicine and strict control of my food consumption,” Mary said.

But perhaps more than her physical condition, one of Mary’s greatest challenges is dealing with the scrutinising eyes of people around her.

I don’t think our society is (that) open yet to judge a person beyond skin deep. I’d rather just be normal than having sympathy or being treated differently, she said.

Indeed, psoriasis is a relatively unknown disease in many parts of the world. “Especially in developing countries, the possibility of getting a correct diagnosis of psoriasis/psoriatic arthritis is extremely limited,” said Lars Ettarp, President of the International Federation of Psoriasis Associations.

“For example, in Tanzania and Kenya, there is only one dermatologist available per one million people. This means a patient has a bigger chance to win the highest score in the national lotto than having a right diagnosis.”

Psoriasis is a chronic skin condition characterised by patches of raised red skin covered by a flaky white build-up. It can cause intense pain and itching, affect daily activities (if it affects hands and legs) and cause severe psychological and emotional pain.

As the visible signs of psoriasis on the skin are often confused with other skin diseases, even amongst general practitioners, problems with stigmatisation arise. As a result, patients face socio-psychological problems in gaining employment, living with their family and functioning within society.

“In a majority of countries in the world, psoriasis is still considered to be just a ‘cosmetic’ disease. And new findings and research results about psoriasis are not spread among the general public, not even among physicians,” said Ettarp, who also has psoriasis.

“Psoriasis is not only a skin disease. It is, in fact, a serious chronic, non-communicable inflammatory disease that affects big parts of the body,” he added.

This year, on World Psoriasis Day (Oct 29), the IFPA aims to create awareness on the burden of disease that greatly impacts the lives of people living with psoriasis (PLWP).

Understanding psoriasis

As global statistics indicate that about two to three people in a hundred could be affected by psoriasis, Mary is not alone.

There are now about 1,500 members registered with the Psoriasis Association of Malaysia (PAM), and most of them have psoriasis, said PAM president Eugene Cross.

Eugene Cross ... My advise to psoriasis patients out there is to join the association so that we can counsel and support them. If they keep it to themselves, it will be an extra burden for them.

A PLWP himself, Cross had spent the past 40 years living with the flares and flakes of psoriasis. From a mild dandruff to being immobilised, he experienced the mildest and worst manifestations of the disease.

“At first it started on my scalp and my doctor thought it was just dandruff.

“But there was a time where I spent eight months completely paralysed as psoriasis lesions covered 80 to 90% of my body. I could not move and had to be carried to the bathroom. I could not flex my arms and legs because my skin could tear just like that.”

While psoriasis symptoms can range from just a mild itch to extreme cases of skin damage like Cross, it is not contagious.

According to consultant dermatologist Dr Allan Yee Kim Chye, the prevalence of psoriasis is not as high as acne or atopic eczema, but the disease burden is still substantial. Although psoriasis is often hereditary, it can arise in persons with no family history.

Some of the telltale signs of psoriasis include pink, scaly patches on the outsides of their knees and elbows on patient’s scalps. “What distinguishes scalp psoriasis from dandruff is that the lesions in psoriasis are discrete patches and have thicker scales, whereas dandruff €“ even the severe ones €“ is usually spread over the scalp and the scales are finer,” said Dr Yee, who is also the medical advisor to PAM.

Some PLWP may also find their nails discoloured or separated from their nail beds. In 10-20% of cases, there may be disruption of the joints, Dr Yee said.

Apart from the physical pain from the itching, burning, flaking and scaling from patient’s skin, the social and psychological impact are equally painful.

“Skin disease, whether it is psoriasis or acne or scars, often come with disproportionate social penalties,” Dr Yee said.

“Studies have shown that acne sufferers have lower job prospects than unblemished persons. Psoriasis sufferers with visible disease on the face or other cosmetic areas and also the hands may suffer some degree of stigmatisation from the lay public who do not understand that the condition is not contagious.”

Among the five types of psoriasis €“ plaque psoriasis, guttate psoriasis, erythrodermic psoriasis, inverse psoriasis and pustular psoriasis €“ plaque psoriasis is the most common.

An alteration in the immune system speeds up the growth cycle of skin cells, causing the cells to pile up and form thickened scales on the skin surface rather than shedding it slowly.

The exact cause of psoriasis is not yet known, but a preliminary report of a pilot study of the Malaysian Psoriasis Registry in 2005 found 57% of patients who reported one or multiple factors which aggravated their psoriasis.

The most common factor was stress, followed by sunlight, infection, trauma and other factors such as drugs, alcohol, some topical medication and pregnancy.

“Different people have different triggers. So, we tell our members that when you have a flare-up of psoriasis, if you have no stress, look at your food. If you find a certain food that irritates you, stop taking it,” Cross said.

By identifying the triggers, people with psoriasis could tailor their lifestyles and habits to prevent flare-ups. As there is currently no cure for psoriasis, avoiding factors that triggers its symptoms is of utmost importance.

The skin and beyond

Today, we know that psoriasis (including psoriatic arthritis) is a systemic disease involving the immune system, Ettarp said.

An alteration in the immune system speeds up the growth cycle of skin cells, causing the cells to pile up and form thickened scales on the skin surface rather than shedding it slowly. In other words, the amount of skin shed in a psoriasis patient in three days can be almost similar to the amount a person without psoriasis would shed in 28 days, Cross explained.

However, recent studies have compelled doctors to look beyond the skin into other complications associated with psoriasis.

“In adults, severe psoriasis is associated with the metabolic syndrome, entailing a risk for type 2 diabetes, obesity and cardiovascular disease. The first study which showed increased risk of cardiovascular diseases and mortality was published in Sweden in year 2005, and has been followed by a number of other studies,” Ettarp said.

With more data, various health recommendations for people with psoriasis were issued by health organisations.

The American Heart Association recommends psoriasis patients above 40 years old to screen for blood pressure, body mass index, waist circumference, fasting lipids, and fasting sugar every two years. Patients are also advised to stop smoking, take alcohol moderately, and exercise.

As psoriasis is not a fatal disease, its progress in research is often hampered by inadequate funding as priorities are given to diseases like cancer, Cross said. Fortunately, with increased advocacy and awareness, more research has been done, and patients could have more treatment options now and in the future, he added.

To keep its members updated, PAM sends out bulletins to all their members at least two or three times a year. Relevant information €“ from new treatment options to how to date €“ are included to make the bulletin an informative and interesting read.

“My advise to psoriasis patients out there is to join the association so that we can counsel and support them. If they keep it to themselves, it will be an extra burden for them,” Cross said.

“When you share your experiences, you will find your burden lighter and easier to live with. You can also come to learn more about psoriasis and how to deal with it.”

For more information about psoriasis, visit:

1. Dermatological Society of Malaysia - www.dermatology.org.my

2. Psoriasis Association of Malaysia - www.psoriasismalaysia.org or tel: 03-89484335, fax: 03-89481537

3. International Federation of Psoriasis Associations (IFPA) - www.ifpa-pso.org