There is a particular misery when, as a parent, you are helpless and can’t seem to relieve your child’s suffering.
It is particularly awful when the child is a baby or toddler who cannot understand or communicate why they are in pain, or why mummy and daddy have to do certain things that make them uncomfortable, but are meant to prevent their condition from getting worse.
Eczema, which is also known as atopic dermatitis, is a skin condition that presents as itchy, red rashes on the skin that bleed easily.
It is a chronic condition that can present in children as young as two to three months of age.
There is no known cause nor cure for this condition, although there are treatments to control the symptoms.
It is, however, believed to be linked to genetics, as it often occurs in children whose family has a history of atopic dermatitis and the related conditions of asthma and hay fever; and a misdirected immune response that leads to defects in the skin barrier.
The good news is that many children with atopic dermatitis will eventually outgrow the condition, although they may still be subjected to the occasional flare-up.
However, in the meantime, both parents and child can be in for a rough time.
Too much advice
For unit trust agent Tan Li Ling, her eldest child Queenie Lai’s atopic dermatitis has meant that her entire family’s diet is tailored to avoid triggers, ie food that could cause her daughter’s eczema to flare up or worsen her symptoms.
Initially, Tan, 35, received all kinds of advice on what not to feed Queenie, which was frustrating.
“Don’t eat chicken, don’t eat fish, don’t eat pork – then eat what? Also cannot eat bread, cannot eat white rice, cannot eat mee – I also don’t know what she can eat!” she recalls.
In the end, she decided that a gluten-free organic diet would be the most beneficial for Queenie, and the entire family would also follow suit.
Children’s favourites like ice cream, chocolates, sweets and cakes are excluded from their diet. So, Queenie gets a jelly cake, rather than the usual baked cake, for her birthday.
Despite a negative allergy test for eggs, Tan also prohibits Queenie from taking eggs.
“She actually went for the skin prick test (to determine what substances a person is allergic to) and it showed that she has no egg allergy.
“But, I found that when she eats eggs, her skin will develop rashes and become itchy,” explains Tan, adding that although they have been asked to go for a more thorough allergy test, using blood, they haven’t done so yet.
Queenie’s strict diet means that Tan has to cook for her every day. Occasionally, she also prepares meals specially for her four-year-old daughter Winnie, who does not have eczema, when she wants to eat something her sister cannot.
“If I don’t cook for her one day, I feel guilty, because I am making her go out and eat all those foods she should not be eating,” shares Tan. “I feel stressed because I have to cook every day.
"And at night, we cannot sleep well because as parents, we are sensitive to our child with eczema as she will scratch and bleed while she is sleeping.”
She says that because of this, Queenie’s bedsheets usually have to be changed every two days.
All their cleaning products, like detergent and floor cleaner, are as chemical free as possible, and the entire house gets a thorough spring cleaning once every two to three weeks.
Shares Tan: “Actually, we have to monitor our finances, because we have to spend quite a lot on her cream and her food.
"If you compare gluten-free and non-gluten free, and organic and non-organic foods, the price difference is quite a lot, so finance-wise, we have to be very careful.”
In addition, Queenie is homeschooled as she was singled out and bullied due to her skin condition while in kindergarten and Year One in a public Chinese school.
While 21-month-old Affan Taufiq is still too young to perceive any prejudice towards his rash-covered skin, his parents Hafifah Jamhari and Taufiq Baharudin are all too well aware of it.
“Even when we go out to buy groceries, people will look at us macam geli sangat (like it’s revolting); it’s very judgemental.
“Some will even pull their kids away from us. It was heartbreaking,” shares Hafifah, tearing up as she remembers those days.
From just a rash behind his head when he was three months old, Affan’s whole body was covered with itchy rashes by the time he was six months.
“The specialist said it was eczema and we had to use steroids,” shares the engineer turned stay-at-home mum.
“We started with a lower class of steroids, and of course it worked wonders – after two or three applications, the redness would disappear – so we thought it was over.
“But when we tapered down the steroids, his eczema would come back, and it became worse than before.”
It was especially difficult for Hafifah, 29, and Taufiq, 32, as they had been trying for a child for awhile.
“He was a happy baby – we didn’t have much problems tackling his emotions back then, but we had really bad problems tackling our own emotions, because we had waited for a long time for a child, and then he was born and he had this issue,” she shares.
Feeling the need for help and support, she went on social media, looking for eczema support groups.
She describes one group that she initially joined as “too radical”. "They told me to not eat this, not eat that, and that is how I started this extreme diet,” she shares.
Hafifah, who was exclusively breastfeeding Affan at that time, lost almost 30kg within four months, eating the same limited menu the entire time.
“But it didn’t help Affan – he became worse, and my emotions also became worse and my health deteriorated. So I knew this was not the right way.”
One thing she observed was that when she was stressed, Affan would also become stressed, triggering a bout of scratching.
“So I managed to control my emotions, and my happy baby became happier and didn’t scratch himself,” she says.
She shares that she now takes 10-15 minutes everyday to have some “me time”, like taking a proper shower or treating herself to a DIY body scrub.
Similarly, Suhazlin Anuar found that when she was calm, happy and accepting of her son’s condition, his skin condition would also improve.
Muhammad Sidqi Mateen Muhammad Muzakkir, 22 months old, developed eczema when he was three months old.
“We went to see both private and public specialists, and the doctors, and even my online searches, all say that eczema cannot be cured, it can only be controlled.
“But at that time, I could not accept it, because I believed that every disease has a cure. Because of that, I tried all sorts of treatments, from modern to traditional,” shares the 29-year-old housewife.
Like Hafifah, Suhazlin who was breastfeeding her son also dieted, cutting out all the foods suggested by others who claimed not eating those foods would cure her son’s condition.
“The word ‘cure’ really meant a lot,” she explains.
However, not only did she lose 15kg from her original weight of 65kg, but Muhammad Sidqi’s condition also went from moderate to severe.
“After I gave up the diet – because I lost hope when it didn’t work – when I started eating all the things I supposedly couldn’t eat, my son’s recovery was faster,” she says.
“The effects of not eating certain foods, of listening to other people, of not listening to the doctor – believing in alternate ways, rather than the doctor’s advice – are not short-term, but long-term,” she adds.
“Until now, my son has anaemia and lacks certain vitamins and minerals – he’s now on supplements given by the doctor.”
She says that he was also slow to achieve some of the normal childhood milestones, like being late to crawl.
She notes that it was better for her to just observe her son’s reaction to what she fed him and avoid those foods that seem to result in a flare-up or itchiness.
Eczema patients, she observes, can be quite different, and what triggers a flare-up in one, may not give a reaction in another.
She shares that, emotionally, it was particularly depressing and stressful to follow various alternative advice, and to be let down when their claims proved to be false.
In fact, caring for her son has taken such a toll on her that she hesitates to have another child for fear of eczema. “It is not easy to handle eczema,” she laments.
Based on science
Like Suhazlin, Prof Dr Lai Oi Ming also did not want to accept that her son’s eczema had no cure.
“When (Ker) Min Ho, my first and only child, had very severe eczema, I brought him from one doctor to another, and I started checking out social media.
“I learnt more and more about eczema, and then I realised there was no cure.
“That was something that was very, very hard for me to accept, because I considered it just a skin condition, so how can a skin condition have no cure?” shares the 51-year-old lecturer at Universiti Putra Malaysia’s Faculty of Biotechnology and Biomolecular Sciences.
To try and help her son, who is now five years old, one of the things she did was to look for eczema support groups on social media. “It is actually quite scary, what is out there,” she says.
“There are some who tell you, you cannot use steroids (which is the main medical treatment for controlling eczema); you cannot vaccinate your child because vaccinations make the eczema worse; and you’re not supposed to eat a whole lot of foods,” she shares.
However, due to her biochemistry background, the scientific and medical papers on eczema resonated more with her, leading her to realise that the main issue with eczema is the effect it has on the skin barrier.
This eventually lead her to develop a cream with anti-inflammatory properties to help reduce the inflammation of eczema, repair the skin from beneath and prevent moisture loss due to the ineffective skin barrier.
The cream, called Remdii, is now being marketed under a start-up founded by Prof Lai, two of her postgraduate students who were involved in the research for the cream, and two of her friends from the business sector.
“During our research for the Remdii cream, my post-graduate student and I realised that almost everyone or their loved ones in the (research) group had eczema.
“So we thought, why don’t we start a support group where we actually give good, proper information that is based on medical reasoning and science?” shares Prof Lai.
However, that group, known as the Malaysia Eczema Support Group on Facebook, soon became “too out-of-control” with people coming in to sell their products and posting non-verified information.
So, Prof Lai started a new Facebook group called the Malaysia Eczema Support Community with tighter control over what can be posted on the page.
“From there, I realised that the community consists of parents of many levels of education, and when you post things that are too scientific, a lot of them don’t get it.
“So, I need to break down the information to a simpler form, and sometimes, I translate it into Malay because a lot of the members are Malay,” she says.
Aside from providing scientifically-based information, the Facebook group also aims to provide support to eczema patients and their families, and to raise awareness about eczema among Malaysians.
Prof Lai adds that what differentiates their group from other eczema support groups is that they have healthcare professionals like dermatologists and an immunologist as their advisors, who can help provide a medical perspective to their members.
Tan, Hafifah and Suhazlin are long-time members of the Eczema Support Community group.