KUALA LUMPUR, Sept 14 — Nur Aqilah Shaari has spent the last seven years fighting an uphill battle with atopic dermatitis (AD).
AD, also known as atopic eczema, is a chronic and recurrent inflammatory skin disorder characterised by symptoms such as skin dryness, itching, flaking, and weeping.
Around six million people or 20 per cent of the Malaysian population struggle with the disease according to data from Allergy Centre Malaysia.
Like many others living with AD, Aqilah has experienced a range of negative physical, emotional, and social effects due to her condition.
The 22-year-old accounting student started developing serious skin problems at the age of 15 that persisted throughout her secondary school life.
Red-hot itch, sleepless nights, and skin-related allergies became the norm for Aqilah and it wasn’t until August of last year that she was officially diagnosed with AD after a hectic period of work and travel triggered severe flare-ups on her body.
The diagnosis was a watershed moment for her and marked the beginning of her journey to get the condition under control.
In conjunction with World Atopic Dermatitis Day today, Malay Mail spoke to Aqilah to find out more about how she copes with AD and her determination to live life to the fullest despite her condition.
“The last three to four years was quite difficult for me. My schedule at the university is hectic and I need to travel a lot.
“In August of last year, I went to a general practitioner (GP). At that time my skin was in such a bad condition and I couldn’t stand it anymore.
“I was almost crying. The GP told me what I had was actually AD and he referred me to a specialist who was Dr Kartini Farah Abdul Rahim,” said Aqilah.
Dr Kartini, who is also the dermatologist advisor of the Malaysia Eczema Support Community (MESC), was a great source of comfort for Aqilah as she adjusted to new strategies to manage her AD.
Keeping her skin moisturised, wearing the right clothes, and being aware of what foods she is allergic to are key factors to managing her condition.
However, there are still nights where Aqilah finds herself tossing and turning in bed due to the painful itch.
“The itch tends to get very bad during night time and it can take two hours for me to get to sleep.
“I’m very tired the next morning and there are days when I experience really bad flare-ups. I can get really stressed during those two to three days.
“AD has affected my daily routine a lot. I have to make sure my skin is not dry every minute of the day and apply aqueous cream twice a day, after every shower.
“Using the moisturiser means my skin tends to become oily when I go outside and because of that, I prefer to be at home as I’m not comfortable being outside. I need to think about a lot of things before I go out.”
The major impact of AD on Aqilah’s life means her mental health was also affected as a result.
She deals with these challenges by fighting stigma and misinformation about AD on her social media and is grateful that her family, friends, and fiancé have become more supportive after learning about her condition.
“It’s not easy to always be positive but I’m trying my best. Every single day I tell myself ‘You are doing okay.’
“I have my down moments when I would cry a lot but after that, I will feel better.
“I think one thing that helps me cope is spreading awareness about the skin disease. You want people to know about AD and about you.
“I post all this on Instagram and when I meet my friends, they have a better understanding of what I’m facing.”
Dr Kartini said it’s common for people living with moderate and severe AD to experience poor quality of life due to the physical, emotional, and psychological burden of the disease.
Misdiagnosis by healthcare practitioners who lack awareness about AD and the use of over-the-counter treatments or alternative therapy without proper medical advice also prevent AD from being properly diagnosed, therefore prolonging the suffering of patients.
A study conducted by Dr Kartini, Hospital Kuala Lumpur head of dermatology department Dr Suganthi Thevarajah, and Dermatological Society of Malaysia president Dr Chan Lee Chin titled “More Than Skin Deep” found that many participants were embarrassed by their physical appearance and were deeply affected by the stigma of the disease, leading to feelings of low self-esteem.
To tackle these issues, Dr Kartini said stronger support networks and better awareness about AD is needed so patients can access the right information about their condition and be informed about the best treatment available to them.
Family members, friends, and partners should also communicate with their loved ones who live with AD to foster a strong foundation of emotional and psychological support.
“It’s crucial for people to understand the disease, how it affects the patient, and how we can be understanding of the challenges faced by loved ones living with AD.
“For this to happen, family members, friends, and partners need to educate themselves about the skin condition and the needs of the patient.
“Be a good listener and be open to discussing their concerns together.
“Counselling by healthcare providers and pharmacists also plays an important role in enhancing treatment compliance and adherence.”
Dr Kartini ultimately hopes that “More Than Skin Deep” can rally stakeholders including patients, healthcare professionals, and the general public to raise awareness about AD and be vocal advocates for facilities and policies that support those affected by the condition.
“This can range from providing hospital-based counselling services and dedicated medical centres to setting up school education programmes and support groups.
“In addition, a doctor-led portal or website and a nationwide initiative to collect data on AD would be a valuable resource to encourage better care and management.”