A child screams in pain as their mother slowly peels off a bandage stuck to raw, wounded skin. The procedure is done at home—not by a nurse, but by a parent who has learned to perform wound care out of necessity, not choice.
This is daily life for many families living with Epidermolysis Bullosa (EB) in Malaysia—a condition where the skin blisters and tears at the slightest touch.
As we mark World Skin Health Day on July 8, we must confront a difficult truth: skin health is not part of our national health conversation, even though for those who suffer, it defines everything.
Skin is not just a cosmetic surface. It’s our largest organ—our body’s barrier, protector, and mirror.
When it fails, the consequences are physical, emotional, social, and financial. But Malaysia continues to treat skin health as secondary, and this silence has consequences.
At DEBRA Malaysia, we advocate for people living with EB, one of the most painful and disabling skin conditions known to medicine. Yet EB is just one example of how those with severe skin diseases are left navigating a system not built for them.
There is no dedicated policy. No sustainable access to specialised wound dressings. there is only limited awareness and stigma that isolates entire families.
To be fair, Malaysia has made some progress. The Ministry of Health’s (MOH) Dermatology Services Operational Policy (2016) outlines clinical care, specialist training, and integration of dermatology services.
But it is a clinical framework, not a public health strategy. There is still no national skin health policy that recognises skin as a vital part of health equity—especially for chronic or rare conditions.
In contrast, the World Health Organization (WHO) recently adopted its first Skin Health Resolution, recognising skin diseases as a global burden and urging countries to prioritise them in national plans. This is not about beauty—it’s about survival, access, and dignity.
Malaysia has an opportunity to lead. The MOH is now preparing the country’s first National Rare Disease Policy. This is a chance to integrate skin health as part of a comprehensive approach—because many rare diseases, like EB, are skin-related and often overlooked.
We believe this is what action should look like:
- Recognise skin health as a public health issue, not just a clinical specialty.
- Include rare and chronic skin diseases in national health and rare disease frameworks.
- Ensure consistent access to medical dressings and support services in public hospitals.
- Establish a national skin disease registry, beginning with EB, to inform planning and resource allocation.
- Train frontline healthcare providers, especially in primary and paediatric care, to recognise and manage complex skin conditions.
- Work with patient organisations, such as DEBRA Malaysia, to design policies that reflect lived realities.
And above all, we must tackle stigma. Children with visible skin conditions are often kept home from school. Parents are blamed or shunned. Patients suffer in silence—not just from disease, but from discrimination.
Countries in our region have shown what is possible. The Philippines, Thailand, and Singapore have policies in place to support people living with rare and chronic conditions. Malaysia has the infrastructure. What we need now is coordinated, inclusive policy backed by political will.
We both write this not only as professionals, but as advocates. One of us represents families who live with the pain of EB every day. The other sees the system from the inside—as a house officer who understands the strain on providers who want to help, but often can’t.
Skin is not too rare to matter. It is not too complex to include. And it is not too visible to ignore.
This World Skin Health Day, let’s finally talk about skin—not in hushed tones or specialist circles, but as a country. Because when skin hurts, lives hurt. And when we act, we do more than treat disease—we restore hope, dignity, and justice.
Saida Abu Bakar is the president of DEBRA Malaysia, a member of DEBRA International and International Alliance of Dermatology Patient Organizations (GlobalSkin). Dr Loo Cheng Yee is a house officer.
- This is the personal opinion of the writer or publication and does not necessarily represent the views of CodeBlue.
