It may seem like a small thing to most of us, but for Elaine*, being able to wear a sleeveless shirt and skirt for the first time since childhood without feeling judged, was an incredible feeling.
The healthcare professional was diagnosed with atopic dermatitis (AD) in her early teens, after her teacher noticed that she was scratching a lot at wounds that never healed.
“She was very concerned about my well-being, because I couldn’t do sports.
“I had to sit out of all the PE (physical education) lessons and I could not be out in the sun for very long, so I could not participate in any co-curricular activities as well,” Elaine, now in her mid-30s, shares.
Sweat exacerbates AD, also known as eczema, triggering the itchiness that characterises the condition.
In fact, Hospital Kuala Lumpur (HKL) consultant dermatologist Datuk Dr Noor Zalmy Azizan notes that: “When you have AD, first and foremost, it’s an itchy condition.
“If it’s not itchy, it’s not AD.”
At its worse, Elaine shares that she would scratch all night until her skin bled, “because when you feel pain, you won’t feel the itch”.
Having to wear the uniform of a shirt with a pinafore back in secondary school, she was extremely self-conscious of the visible rashes and wounds on her exposed legs and arms, especially when sitting on the bus to go back and forth from school.
“It made me feel very small, and I would isolate myself naturally after a while because I knew that they didn’t want to be near me – they thought it was contagious,” she shares.
Fortunately, her classmates in the all-girls school she attended did not stigmatise her and tried to include her in all their activities.
It begins with the genes
According to Dr Noor Zalmy, who is also vice-president of the Dermatological Society of Malaysia, AD is a result of multiple factors coming into play.
“You can’t have the disease if you do not have a genetic predisposition to get AD.
“So there is a genetic predisposition causing a lot of barrier defects on your skin; you have a genetic predisposition giving rise to atopy, where the immune system is not regulated as well as a normal person’s, plus because of the defective barrier function, you’ll get more sensitive to a lot of allergens,” she says.
Our skin functions as a wall against various allergens and microorganisms that might otherwise enter our body and cause inflammation or disease.
A defect in this “wall” not only makes us more vulnerable to allergens and microorganisms, but the overactive immune system of an AD patient also causes it to overreact to such “invaders”, causing excessive inflammation of the skin, resulting in an AD flare-up.
Although the flare can be treated, making it go into remission, the cycle will begin again each time the patient is exposed to allergens he or she is sensitive to, resulting in a potentially endless cycle of flare and remission.
The constant scratching by the patient can also cause an erosion of the skin that can eventually turn into an ulcer, and later cause lichenification, or thickening, of their skin.
According to Dr Noor Zalmy, the prevalence (or frequency) of AD increases along with the level of development of the country.
“And Malaysia’s climbing up fast.
“It used to be 9.8% in the 1990s, and when we did the Isaac (International Study of Asthma and Allergies in Childhood) study, we found that the prevalence of children in Malaysia having AD has now climbed up to 13%-14%, so we are approaching that developed nation status.
“And we will probably have about over 20% of AD cases in the year 2022 as we develop,” she says.
Prevention by avoiding the allergens that trigger their condition is just as important as the treatment AD patients receive.
Dr Noor Zalmy, an AD patient herself, notes that stress, while frequently mentioned as one of the triggers of AD, can trigger other skin conditions as well, e.g. acne.
“In AD, because of the barrier function defect, infections – e.g. bacterial infections, especially Staphylococcus aureus infections – can act as a super-antigen that creates more inflammatory cells and triggers the itchiness; so having an infection can be a trigger,” she says.
Other items that can irritate the skin include harsh soaps, perfumes, pet fur or hair, dust and house dust mites.
“Almost 90% of AD patients who do an allergy test will be allergic to house dust mites,” she adds, noting that dust mites are the most common trigger for AD.
However, consultant dermatologist Dr Bong Jan Ling notes that sometimes, a trigger just cannot be found.
Children especially, are often blamed by their parents for doing something that triggers their eczema.
“The most common thing they get blamed for is food.
“Everyone attributes a flare of AD to food, and up till now, the research for food-related flares has not been substantiated, at least not in older kids.
“Dairy may play a role in very young children where milk is the sole nutrition, but as they get older, that association becomes weaker,” she says.
Dr Noor Zalmy agrees, saying that some of the children who come into the HKL dermatology clinic are malnourished because their parents do not allow them to eat any proteins.
They look like they have kwashiorkor, which is a form of malnutrition caused by the lack of protein in the diet, according to her.
She notes that it is usually the well-educated parents who subject their children to this, as they will pay for food allergy tests that cost around RM2,000.
Dr Noor Zalmy explains that: “Once you have all these inflammatory cells in your body, you will be positive for most of the tests because your immune system is not fully controlled.
“You’ll be positive for rice, for soya milk, for bread, for wheat, so what can the little kid eat? Water probably.”
Dr Bong adds: “I guess the message is quite clear, do not be fixated on food as a trigger.”
She also notes that many middle- and high-income parents think that natural or organic products are the best.
“I always explain to them, one of the commonest triggers for an AD flare is fragrance.
“And what is fragrance? Fragrance is a natural product from plants and flowers.
“So anything that smells can be a potential trigger for a flare.”
Dr Noor Zalmy adds that she had a patient, a baby, who was allergic to organic bamboo diapers that were imported from the United States.
“So it is true what Dr Bong says. Nothing is actually organic; to me, it’s all a gimmick.”
Treating for control
While there is no cure for AD, it can be treated and managed.
Dr Bong explains that there are two components to be tackled during treatment: the dry skin from the breakdown in the skin barrier and the excessive inflammation from the overactive immune system.
“To target the breakdown in the skin barrier, you need an emollient – preferably one that has hypoallergenic preservatives and is fragrance-free,” she says.
“The second thing to target the inflammation are the old-fashioned steroids.”
She notes that while many people are freaked out by steroids, a doctor’s job is to educate patients and parents to use steroids appropriately and intelligently to avoid the side effects.
Dr Noor Zalmy notes that moisturising with an emollient requires a lot of discipline, and neither child nor adult patients do it consistently in her experience.
“For mild AD, moisturising is the solution – it can control your disease.
“Almost 70%-80% of AD can be controlled if moisturising is done properly.”
For moderate to severe cases, Dr Noor Zalmy says that photo-therapy is an option; however, it is usually available only in public hospitals.
Otherwise, patients can be given systemic treatment like oral or injectable steroids, and azathioprine.
However, she emphasises that patients on these medications must be strictly monitored by a dermatologist for potential side effects, as they act to suppress the immune system.
As there weren’t many treatment choices when Elaine was first diagnosed, she shares that tar was part of her treatment, along with emollients and special soaps, which didn’t smell good.
“Oh boy, it stinks! It would stop your itch – great, but it stinks.
“So, imagine you take a bath and go to school, and you stink,” she shares.
Over the years, she has progressed from tar and emollients to steroids, then to systemic therapy.
“That (systemic therapy) worked for awhile until I had a bad case of sepsis (a body’s extreme response to an infection).
“After that experience, there was nothing – I went back to steroids when I had a flare.”
Then she heard about the targeted therapy dupilumab.
Approved October 2019 in Malaysia to treat moderate to severe AD patients, dupilumab is a monoclonal antibody that inhibits the overactive signalling of two proteins, IL-4 and IL-13.
These two proteins are believed to be major drivers in the persistent inflammation of AD and certain other atopic diseases.
After four weeks on the injectable biologic, Elaine shares that: “Within one week, I would say I didn’t consciously scratch.
“And I could sleep after three days. Being able to sleep is such a relief, because you can wake up refreshed and not tired from being kept up by the scratching.”
She adds that she was initially afraid to start dupilumab because of potential side effects, the most common of which are injection site reactions, eye and eyelid inflammation, and cold sores in the mouth or on the lips.
But after talking to the doctor and looking through the results of the clinical trials that tested the biologic, she decided to try it.
And for now, the prescription drug seems to be working well for her.
*Name changed to protect her privacy
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