Rare diseases: Language matters – Moving from ‘curses’ to care

Amar-Singh HSS and Yap Sook Yee

We would like to thank the media for highlighting the important issue of children born with rare diseases.

Rare diseases are a large number of predominantly genetic conditions. While each individual disease is rare, they are collectively common because there are so many of them. It is estimated that together they affect 3–5% of the population.

Advances in medical science mean that many of these conditions, once called ‘Orphan Diseases,’ now have effective treatments and pathways to hope.

While the media and public grow in their understanding of rare diseases, it is important that we frame the discussion and information in a sensitive manner and use appropriate language.

A special report produced by Astro Awani, aired on 27 December 2025, focused on one rare disease – Severe Combined Immunodeficiency (SCID).

Sadly, the title and ‘header’ of the report reads “SCID, ‘sumpahan’ yang mampu rosakkan keturunan” (SCID, a ‘curse’ that can damage offspring).

Although the word ‘sumpahan’ is framed in inverted commas, it still conveyed to viewers a negative connotation. It is possible that that title and focus were designed to grab attention and be sensational.

However, the impact that title creates about rare disease is a negative one and generates fear.

In addition, using the word ‘curse’ to describe a genetic condition reinforces old superstitions that these conditions are a result of ‘divine punishment’ or ‘sin’ on the part of the family and child.

This would feel stigmatising to the families and individuals living with SCIDs and other rare diseases. It focuses more on emotion rather than science, hope and the available cures for these conditions.

Imagine the reaction and feelings of siblings in the family with rare diseases. Titles such as these make siblings and parents less likely to share about a rare disease in the family; it isolates them from society.

The phrase ‘’damage offspring” is also quite harsh when referring to children. Damage implies something is broken; in this context, a child. Whereas SCID is a condition involving the body’s immune system’s inability to fight infections.

A more appropriate title might have been “Special report: The fight to prevent and cure children from SCID” or “Special report: Breaking the cycle of Severe Combined Immunodeficiency”.

We do want to thank Astro Awani for what was a well-intended gesture to provide more attention to the pressing needs for children with rare diseases. The content of the report on SCID was balanced and accurate.

However, the focus that may remain in the hearts and minds of the viewer will be to dread this condition rather than work to overcome it.

We bring this out in the media not to focus on any one media but in the hope that all media, media practitioners and the Communications and Multimedia Content Forum of Malaysia (CMCF) will take note and change.

Our choice of language shapes the environment we live in. Using respectful and appropriate language empowers not just the families with rare diseases but the entire Malaysian community.

We hope this opinion does not stop or limit the media from continuing to cover the important issue of children with rare diseases.

Words are like seeds; they possess the quiet power to take root in hearts and minds. We ask the media to help us plant a garden of hope.

Dato’ Dr Amar-Singh HSS is a consultant paediatrician and child-disability activist. Yap Sook Yee is an advocate and mother of children with a rare disease.

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