#HEALTH: More than skin deep

FOR the longest time, Lua Eng Leh felt like her body was at war with itself.The 39-year-old, who works as a procurement manager at an electrical manufacturing company in Johor Baru, has struggled with Generalised Pustular Psoriasis (GPP) for nearly her whole life. It has largely been a lonely and challenging journey.When she was 2 years old, her parents noticed pustules beneath her fingernails while clipping them. Concerned, they took her to a doctor who informed them it was a fungal nail infection and prescribed anti-fungal medication.As expected, this did not help and her parents continued to seek answers to their daughter's perplexing condition over the years, even visiting traditional Chinese medicine practitioners. However, none of these interventions helped.When Lua was 10, she was finally referred to a dermatologist who accurately diagnosed her with GPP."He told my mother that while my symptoms were still mild, they would likely worsen with age, especially during the onset of puberty."Lua soon discovered this herself. Her condition worsened once she entered puberty. At 17, the symptoms escalated, with pustules spreading across her entire body, with red blisters and accompanied by a burning sensation.During this time, she had to take six months off school because she could barely sleep due to the constant pain and itching.Since scratching only aggravated the condition, she had to rely on creams to soothe her skin and spent a long time carefully applying moisturisers and medicated creams after showering."Back then, little was known about GPP. We did not know what triggered my flares, so my parents put me on a strict diet of only meat and vegetables because they believed that shellfish and seafood could cause flare-ups. However, my flare ups remained frequent and unpredictable."Later, Lua would learn that stress, minor infections or a fever — and even changes in weather — could trigger flare-ups.Living with a condition that visibly affects her appearance has naturally had a huge impact on her social life.
THE STRUGGLE FOR NORMALITY
"I did not have many people to talk to when I struggled with my illness," she says.When Lua was first diagnosed 20 years ago, there was no access to online support groups or forums where she could share her problems.
In 2020, when she enrolled in a clinical trial designed for the treatment of GPP flares using biologics, her condition was finally brought under control."From the first time since I was 17, I could lead my life like a normal, healthy person."However, Lua has made a decision to remain single.Many people don't understand what GPP is, she says, and constantly having to explain her condition to others can be frustrating."I have decided not to pursue any romantic relationships as I do not want to put myself in a position where I have to explain my daily struggles to someone who may not understand or even be repulsed by it."She has also ruled out having children as she doesn't want to risk passing on her condition.Meanwhile, for Yuzlina Che Yaacob, 46, the first sign that something was not right happened when she was expecting her first child.During her second month of pregnancy, she noticed a cluster of rashes on her right thigh, about the size of a 50 sen coin.She assumed it was a mild allergy or rash related to her pregnancy and pierced the pustules with a needle. It disappeared soon after, but it wasn't long before it reappeared on her hand.After numerous hospital visits and consultations with a dermatologist, she was diagnosed with GPP in 2006."When I have a flare-up, my skin becomes extremely dry, inflamed, painful and sometimes covered with pustules, making even simple movements very uncomfortable."Mornings are especially difficult for Yuzlina. Getting out of bed takes extra effort because her skin feels tight and sore.On particularly severe days, she has to adjust her daily routine by limiting physical activities and avoiding anything that might trigger further irritation to her skin."Pregnancy is a big trigger for me. My first symptoms appeared during my first pregnancy and worsened with each subsequent pregnancy. The flare-ups were so intense that they covered my entire body, making it difficult to walk or even wear clothes."Instead of the pregnancy glow that most women experience, she had to live with her face covered in pustules and the skin looking reddish-purple."I felt like a monster and it made me self-conscious. Whenever I was pregnant, I felt a mix of emotions. I felt sad and ugly, while at the same time excited at expecting a new child."When it comes to managing her symptoms, reducing stress is a priority. This was one of the reasons her husband encouraged her to give up her teaching career as the work stress was worsening her condition.Physical or emotional stress is a major trigger. In 2011, while the family was in Indonesia, Yuzlina tragically lost her 1-year-old daughter in an accident."Bringing her body back to Malaysia was heartbreaking for me. It was one of the lowest points in my life."Due to the severe emotional stress, her psoriasis flared up badly and her entire body was covered in pustules.During flare-ups, Yuzlina slows down her activities, cancels plans and avoids social gatherings as she doesn't want to deal with questions or people staring at her.There are days when she feels very self-conscious and emotionally drained, but she tries to stay positive by surrounding herself with understanding people, especially her husband and children.GPP can be tough, but with the right treatment and lifestyle adjustments, it is manageable, she says bravely."The key word here is manageable. There is no cure. Be patient with yourself, educate yourself about your condition and connect with support groups for the disease."
UNDERSTANDING GPP
Generalised pustular psoriasis (GPP) is a rare and severe variant of psoriasis and typically manifests as a widespread rash with numerous pustules, forming what is often described as a "lake of pustules" explains Gleneagles Hospital Kuala Lumpur consultant dermatologist, Dr Peter Ch'ng.
Early intervention with appropriate therapies is critical to improving patient survival and preventing long-term complications.
"The exact cause of generalised pustular psoriasis is not yet fully understood, but we do know that a proportion of GPP cases have an underlying genetic component."
Long-term management of GPP focuses on preventing flare-ups, maintaining disease remission, and ensuring overall well-being, he adds.
Since infections, stress (both psychological and physical), lack of sleep, and even
environmental factors can trigger GPP, patients are advised to take proactive steps to minimise these risks.
Lifestyle modifications play an important role in reducing the likelihood of GPP flares. Patients should avoid smoking and alcohol, as these can negatively impact immune function and overall skin health.
Regular exercise, a balanced diet, and stress management techniques can help maintain overall well-being and reduce inflammation.
"Proper skincare is also essential, for example keeping skin well-moisturised can prevent excessive dryness, which has been known to trigger psoriasis flares," says Dr Ch'ng.
MANAGING GPP
In the long-term, patients who have access to the newer biologics may not require any additional medication once their flares are under control, he adds.
However, for patients on conventional therapies, long-term maintenance therapy along with careful tapering of dosage under medical supervision is necessary to manage GPP and minimise side effects.
Ensuring that patients adhere to the prescribed treatment is crucial to control the disease and prevent complications, he adds.
One of the main misconceptions surrounding GPP is that it is contagious.
In reality, the pustules are sterile, meaning they do not contain bacteria, and the condition cannot be transmitted through contact.
The stigma surrounding psoriasis and GPP often leads to patients avoiding public spaces such as swimming pools or even the barber, fearing they may be turned away, further adding to the burden that patients already carry given their condition.
gn4id:60911517
GPP - psychological impact
*Emotional distress
Patients often struggle with self-esteem and negative body image due to the highly isible nature of the condition, leading to feelings of frustration, anxiety, and depression.
Social isolation
Many patients withdraw from social interactions, avoiding friends and public spaces due to embarrassment or fear of judgment.
Strain on personal relationships
Many patients lose interest or are unable to have intimacy in their relationships or marriage due to the pain, discomfort and emotional distress.
Family members often struggle to provide care to patients, while managing their own emotions, which can lead to stress and even burnout.

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