Heal

Learning to live with psoriasis

Although there is no cure for the disease, treatment helps to control the condition and improve quality of life. Kasmiah Mustapha speaks to a skin specialist

WHEN Roshazma Che Hamid noticed red patches on her hands, she thought she had developed some sort of skin allergy. After a visit with a dermatologist, she was given medication. But her condition continued to worsen.

The red patches, itchy and painful, spread to almost 90 per cent of her body, and even her scalp and face.

Not knowing what caused the condition, Roshazma tried to hide it by wearing long-sleeved high-necked shirts. Still people would stare, and stay away from her as they assumed it was contagious.

“I was depressed and had an emotional breakdown. Every day I would cry in the toilet at work because I could not deal with the questions and looks. Sometimes I just wanted to stay home because not only had I these red patches, I also suffered from hair loss and joint pain.

“Some days were better than others but at the same time I had to deal with the uncertainty. Would I have another flare-up today? Would the itching keep me up tonight? Would I be able to leave the house without being stared at? Would I be pain-free?”

She decided to seek a second opinion and was diagnosed with psoriasis — a chronic autoimmune condition that causes the rapid build-up of skin cells. In psoriasis, the immune system attacks healthy skin cells by mistake, resulting in an increased production of the cells. The new skin cells move to the outermost layer of the skin and form thick, scaly patches.

Roshazma, 31, is being treated with biologics which has helped in controlling the flares. As there is no cure for psoriasis, Roshazma accepts the fact that she has to live with the condition for the rest of her life.

“For now there are no more red and scaly patches as the condition is under control. I am also determined to control it with a change in lifestyle, which includes eating healthy, exercising regularly, being positive and trying not to be stressed out.”

A SERIOUS CONDITION

Consultant dermatologist Dr Peter Ch’ng says some people perceive psoriasis as only a skin disease, not knowing that it also increases systemic inflammation, which contributes to a higher risk of other co-morbidities including cardiovascular disease, hypertension, diabetes and obesity.

In Malaysia, as many as 23.6 per cent of psoriasis patients are obese, 26.3 per cent have hypertension and 17.4 per cent are diabetics.

Psoriasis is an autoimmune disease that if left untreated can lead to death. Severe psoriasis that covers more than 90 per cent of the skin can cause bacterial infection in the bloodstream that can lead to sepsis. Sepsis can rapidly cause tissue damage, organ failure and death.

“It is important that the sufferer seeks treatment immediately. But one needs to know that there is no cure for psoriasis as the aim of treatment is to control the condition. Many patients cannot accept this and seek alternative treatments which may contain steroids, which can cause more damage to their organs, including the kidney and liver.”

“Naturally with bad skin, patients suffer from psychological issues. It affects their quality of life, relationship and work. Patients are self-conscious and ashamed of their condition, which leads to social isolation, depression and anxiety.”

A study reported that 38 per cent of patients are diagnosed with a psychological condition, 25 per cent have anxiety and 24 per cent are depressed. More than 80 per cent say that they are self-conscious and ashamed, 40 per cent say they are stared at in public and 17 per cent are turned away from services.

TREATMENT GOALS

According to The Malaysia Psoriasis Registry, there are 21,000 psoriasis patients, but the actual figure is believed to be 500,000.

Dr Ch’ng says the data is based on voluntary registration of patients who seek treatment at public hospitals. Unfortunately most doctors in private medical centres do not register their patients, so there is a significant under-reporting of psoriasis cases in the country.

“I am sure we have more than this number.

It is also under-treated because between 20 and 25 per cent have severe psoriasis but only five per cent are treated with biologics. Many may opt for alternative treatments or do not seek treatment at all.”

“We need to raise awareness that the current treatment with biologics has changed the outcome of the disease. Biologics is an antibody and works to block against the attack by the immune system. Patients no longer suffer from side effects and the condition is better controlled.”

Left untreated, psoriasis patients are at risk of developing psoriatic arthritis and ankylosing spondylitis. About 30 per cent patients develop psoriatic arthritis, characterised by painful, stiff and swollen joints. Repeated flares and worsening of the condition can also result in permanent joint deformities.

Ankylosing spondylitis is an inflammation of the spine that causes spinal bones to fuse, resulting in pain, stiffness and a loss of flexibility. The fusion of spinal bones can have serious effects including restricting lung function, which causes breathing difficulties.

The target of treatment is to control the condition by at least 90 per cent and reduce the risks of developing complications. “This clears their skin, improves quality of life, reduces risks of joint pain and complications of the immune system. The biologics has different efficacy levels, as they can be prescribed every two weeks, every month or every three months.

“At the same time, patients also need to be aware of the triggers. Food and stress can lead to flares.”

Novartis has launched the Let’s Be Clear app for patients with psoriasis, psoriatic arthritis and ankylosing spondylitis to better manage their symptoms and treatment. The app allows patients, who are prescribed with Novartis’ biologics, to track symptoms and doctor’s appointment. Patients can also track their disease progression through daily journal entries.

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