‘The pain was unbearable’: S’porean girl, 9, could not shower without screaming in pain due to her eczema flare-ups

It was after an especially stubborn bout of the flu that auxiliary police officer Effendi Madon, 40, first noticed the small, red itchy patches on his daughter Melissa’s arms, neck, and the back of her legs.

Melissa was only four at the time. Dismissing the patches as a simple case of heat rash, Effendi expected them to disappear in time.

They didn’t.

The Onset

Melissa’s skin became angry, red and raw, swollen and hot. The itch became intolerable and she scratched constantly. Effendi family’s nightmare with the chronic skin disease known as atopic dermatitis had begun.

What is atopic dermatitis, or AD?

Associate Professor Mark Koh, Head and Senior Consultant, Department of Dermatology at KK Women’s and Children’s Hospital, explained: “It is a chronic inflammatory skin disease and the most common form of eczema, affecting up to 20 per cent of children in Singapore.

“It is caused by an abnormal skin barrier and an overactive immune system, leading to inflammation of the skin.”

Risk factors include having family members with other atopic diseases such as hay fever or asthma.

Symptoms include dry skin, red and inflamed rashes, intense and persistent itching, poor sleep, severe skin pain and discomfort.

This negative combination very often has an adverse effect on school or work performance and the ability to concentrate, and can lead to an increase in sick leave.

In a Rainbow Across Borders patient report titled Journeying Through Life with Atopic Dermatitis, the authors, who include experts in the field of dermatology and paediatrics, noted that “being diagnosed with a chronic illness is always a distressing experience for patients and their families.”

It highlighted several considerable challenges for families such as:

Emotional

• The joy of parenthood destroyed by their child’s red, patchy skin and inconsolable crying.
• Feelings of guilt and shame, helplessness and depression.

Financial

• Increased expenses due to the need for long-term treatment.
• It is common for one parent to stop working to take care of their child, resulting in reduced household income.
• Most private insurance policies do not cover atopic dermatitis treatment.

Practical

• Care regimens, treatments, and frequent laundry.
• Exhaustion resulting from being kept up all night caring for their suffering child.

The report also noted that myths and misinformation abound either from the internet or well-meaning friends and family, and advises families to seek reliable sources of information and medical help.

1)

• Myth: It’s only an itch, not serious.
• Fact: Serious cases can cause hospitalisation and death by sepsis.

2)

• Myth: Eczema can be cured.
• Fact: There is no cure. It can only be controlled.

3)

• Myth: Steroids are bad.
• Fact: Steroids are safe and effective if the right type is used at the right quantity, frequency and duration.

4)

• Myth: AD is caused by an allergy.
• Fact: Food allergy is an uncommon trigger of AD.

A physical and emotional toll

Effendi’s experience certainly bears out the report’s findings.

In the five years since the rashes first appeared, he and his family have ridden a roller coaster of pain, confusion, frustration and exhaustion.

It has been an excruciating experience for the parents. “We were clueless about what was happening to her,” Effendi said.

“We felt heartbroken, helpless and sad looking at her crying and screaming in pain.”

Melissa’s dermatitis was severe.

Effendi told Mothership her body sometimes felt like it was on fire and that she scratched so hard that she would bleed and leave deep wounds on herself.

The condition also caused conjunctivitis, which stung her eyes and made her eyelids swell.

She couldn’t even shower without screaming in pain as the water touched her sensitive skin.

“The pain was unbearable for her but we had no choice but to wash her and make sure her wounds were clean to avoid further skin infections,” Effendi said.

Sleep was fitful and broken.

Adding to the stress of her medical condition was the toll it took on her emotionally.

Once a happy-go-lucky little girl, Effendi said his daughter became depressed, withdrawn and afraid of going to school because she got bullied.

She was an easy target.

With her hand socks, long pants, and the chemical smell of paraffin wax enveloping her, some students told her she “looked weird and ugly, that her face and skin were disgusting, and that she smelt bad,” her father said.

The bullying made Melissa refuse to attend school.

“She said no one wanted to be her friend because she is ugly and smells bad."

Associate Professor Koh elaborated: “For AD patients, this is both a physical and emotional battle that makes every day a challenge.

“In addition to the physical symptoms, AD affects a patient’s self- esteem and social functioning and limits simple, everyday activities which can reduce the quality of life.

This often leads to patients…feeling depressed, stressed and frustrated during their flares, which in turn exacerbates their condition and traps them in a cycle of disease and distress.”

As the report noted: “The burden on caregivers is enormous. Caring for the young AD patients requires a lot of time. Scratching associated with itch can cause harm to the skin and require caregivers to monitor children at all times, even throughout the night."

“Some parents are very affected and may blame themselves for the condition. Not understanding that stress is a factor, they may end up loading more stress on themselves and the child. At times, the doctors have had to step in to help manage the tension between parent and child.”

Marriages also come under tremendous pressure.

Amanda, a focus group member in the patient report, who has a five-year-old son, shared: “When our son’s condition was not properly diagnosed, it put my marriage under a lot strain (sic). The stress was incredible… making decisions, what’s the best health decision. There was a lot of arguing, differences in opinion.”

Melissa’s parents did their best to alleviate her suffering.

Their home became an endless parade of shower gels, shampoos and creams.

“Whenever we saw an advertisement claiming something could help we would buy it,” Effendi said.

“But sadly, most did not work for her.”

“As a parent and also a caregiver, it was heart-breaking to know that Melissa was diagnosed with atopic dermatitis.

She had no idea about what was going on, so we had to calmly explain to her about her condition and what steps that she would need to take in order to heal her skin.”

It wasn’t until Melissa was formally diagnosed by Associate Professor Koh and prescribed proper treatment, that there was finally a break in the clouds.

“We used only what the doctor prescribed,” Effendi said.

“To avoid flare-ups or triggers, we also watched her diet and Melissa’s skin got better.”

How to manage the condition

Essential education on how to manage AD (which is chronic and incurable) followed.

Medication, a healthy diet, and the removal of as many triggers as possible were all part of the treatment.

Emphasising the importance of adhering to medical advice and treatments, Associate Professor Koh said: “Physicians are often challenged by poor adherence to treatment by patients for reasons such as frustration with medication efficacy, inconvenience and fear of side effects.

“Most AD patients respond to treatment with topical therapies, including frequent, daily application of moisturisers, and topicals that contain anti-inflammatory medication, such as corticosteroids and calcineurin inhibitors.”

In addition to prescribed medication, there are other things caregivers and patients can do:

• Apply moisturisers even when the eczema is dormant, as this will help to minimise flare-ups.
• Use anti-inflammatory medications when the skin is red, itchy or bumpy and continue until the skin is flat, not red, and not itchy. Many patients and caregivers stop this application too early. This can lead to the condition flaring up repeatedly.

In Melissa’s case, everything from the type of fabrics she wore (she could only wear clothes made of a special, non-irritating fabric), the temperature of her environment (too hot and she would break out, too cold and her skin would become dry) and all her toiletries (only fragrance-free) had to be strictly controlled.

There are several pillars to lean on when handling a condition like AD.

Medical intervention is of course one, but just as important is the support of family and friends.

Family and friends have been a bulwark of encouragement and Effendi is very grateful for their advice and understanding.

“They told us never to show Melissa that we are feeling sad or stressed. We should always stay positive, take good care of our health and take a break whenever we can. These might be simple advice but they mean a lot to us. We are truly blessed and thankful.”

“They are always giving Melissa and us words of encouragement, helping us when we need an extra pair of hands. Also, I am thankful to my supervisors/managers and colleagues in my workplace who support and understand the situation that I am in.”

The journey has been long and difficult, but there is light at the end of the tunnel.

Associate Professor Koh noted: “The landscape of eczema treatment is changing rapidly.

“A major breakthrough treatment for moderate to severe atopic dermatitis is through biologic therapy, which targets specifically the Type 2 inflammatory pathway – the main key driver of AD.”

Melissa is now nine years old. While her condition persists, biologic therapy has helped in reducing the symptoms. “Her skin is much better and her flare-ups have reduced,” said Effendi.

“She is much more active, lively, much happier now, and her confidence level is much boosted too.”

Effendi shared some valuable lessons learned along the way:

• Always encourage our children, be with them, communicate and try to understand the pain they are going through.
• Love them unconditionally.
• Do not be ashamed to ask for help when you are in need.
• Most importantly, do not let them feel like an outcast, protect them at all cost as they feel vulnerable at times.
• You would be surprised to see how strong you or your children are.
• Have faith in your children and yourself too. It may not be easy but you will get through it.

Finally, he said: “Stay positive and ignore mean comments or remarks other people make. After a storm, comes a rainbow.”

This article was brought to you by Sanofi, in commemoration of World Mental Health Month. Remember that a little support and empathy goes a long way, for people living with AD.

All images courtesy of Effendi Madon.