Atopic dermatitis needs greater public awareness: group  

WORLD Atopic Dermatitis Day 2021 passed by quietly on September 14 – unknown to many. But for the thousands of people afflicted with this condition worldwide and in Malaysia – it was perhaps another day of agonising “scratch till you bleed and cry in silence sleepless night”.  

Atopic dermatitis, or AD, may be a mouthful to the uninitiated. But for those afflicted with this inflammatory condition, it can be atrociously painful. Not just because of the unbearable itchiness – but the unsightly wet and oozing external lesions can have an emotional and negative social impact on their lifestyle.  

Their misery can also be further accentuated by skin “so dry” that it flakes off with simple movements like getting off the bed or standing up from the office chair. Waking up to find sheets and pillowcases stained with blood because of uncontrollable scratching during sleep is also a common experience of patients.

This may sound extreme, but it is the worst-case scenario for many afflicted with this skin condition.   

AD is a chronic skin malady that is greatly misunderstood in Malaysia, reveals the 'More Than Skin Deep: Atopic Dermatitis in Malaysia Report' authored by the Dermatological Society of Malaysia (DSM).

In conjunction with World Atopic Dermatitis Day 2021, DSM launched a new campaign themed “#UncoverLife – Atopic Dermatitis, More Than Skin Deep”. It is an initiative to debunk myths of the disease and highlight patient experiences.

The campaign also issued an educational webcomic series by award-winning Malaysian artist, Erica Eng, an AD patient. It hopes to debunk myths of the disease and highlight the experiences of the afflicted.

Citing low awareness and persistent misconceptions that contribute to delayed diagnosis and poor management of the condition, the campaign, in collaboration with the Malaysia Eczema Society, also aimed to rally patients, caregivers, and healthcare professionals to break free from the condition and #UncoverLife.

Datuk Dr Noor Zalmy Azizan, consultant dermatologist and president of the DSM, said at a recent webinar: “There is a great need for awareness among patients and public as misconceptions can get in the way of people seeking medical advice and treatment.

“To help dispel falsehoods about AD and shed some light on what patients go through, we have partnered with Malaysian artist Erica Eng to develop a webcomic series so that others can see AD from a patient’s perspective.” 

She said by presenting the condition in a visual and easy-to-understand medium, they hope more patients will seek proper diagnosis and care so they can experience a better quality of life and support from others.

“This is why our campaign name is also a call to action, for patients with AD to #UncoverLife.”

She said the webcomic series reveals the trials, tribulations and triumphs of Shomendra, Elaine, and Iris in their journey towards overcoming the physical, emotional and social challenges of managing AD.

With more than 20% of Malaysian children affected by AD and many continuing to experience symptoms well into adulthood, the #UncoverLife campaign is relevant to a significant portion of the Malaysian population.

“While the true prevalence of AD is unknown as many patients remain undiagnosed, we do know that it affects patients in many ways. From their physical appearance to their mental health – it also affects their ability to study and work."

Burden of living with AD

According to Dr Peter Ch'ng Wee Beng, consultant dermatologist, an exco member of the DSM, as well as chairperson of the Cosmetic Dermatology & Laser Medicine Board, most people don’t understand the burden of living with AD.

“Apart from visible signs such as dry, flaking skin or a scale-like appearance that causes people to stare, AD can also cause intense itching that is difficult to ignore. It keeps patients from sleeping well, while those with cracked skin on their hands and feet find even basic daily tasks to be a challenge.”

In recognition of this, the “More Than Skin Deep: Atopic Dermatitis in Malaysia Report” also highlights the need for improved support networks for patients.

It recommends the formation of a national patient support group to offer emotional and psychological support in coping with issues like loneliness and social stigma. Such a group would also play an important role in providing credible information and helping to dispel myths.

“A lot of well-meaning advice is based on myths that are perpetuated online. Many patients are still told that AD is just a simple skin condition. That [it] is easily cured with this remedy or that, or they are treated like outcasts because others believe it is contagious or caused by poor hygiene.

“This takes a heavy toll on a patient’s mental health,” explained Dr Leong Kin Fon, consultant paediatric dermatologist and advisor to a patient support group, at the Malaysia Eczema Society.

“This is why patients need more understanding and support, which should come from a consolidated source. Such a national patient support group that consists of fellow patients, with advice from a relevant medical body such as the DSM.”

Experts agree that peer support works hand in hand with effective treatment and management of the disease.

“Fellow patients can be a good source of assistance for others. They can encourage them to get a proper diagnosis, seek medical advice, and comply with treatment so that they can manage their condition well.

"As AD is a complex condition that affects each patient differently, patients with moderate-to-severe AD may benefit from additional forms of therapy, such as biologics, that are prescribed by specialists,” added Dr Peter Ch'ng.

He said: “This underscores the importance of diagnosis and treatment. Without which patients may not experience significant improvement in the severity of their symptoms.”

Comic artist Erica Eng, who developed the webcomic series, can relate to this as she has first-hand experience with AD.

“I know what it feels like, the discomfort, the itching, the sleeplessness, the inconvenience of it all. At first, I didn’t even know what it was, and it was a relief to be diagnosed so that I knew what to do about it.

"My experience allowed me to empathise with the patients whose stories are told in the webcomics. It is my privilege to be able to help spread awareness about AD while sharing their insights about living with the disease and how it impacts them,” said Erica.

“I hope that everyone who views the comics will have a better understanding of how patients feel and the challenges they face. [They can] share the comics widely for others to learn as well.” – The Vibes, September 20, 2021

Note: The #UncoverLife webcomic series is available on the microsite https://uncoverlife-ad.com/. Find out more about atopic dermatitis from the Malaysia Eczema Society (Persatuan Ekzema Malaysia) Facebook page at https://www.facebook.com/groups/1226038834396732/ or visit www.dermatology.org.my to find a dermatologist