Raising awareness of rare disease

I WRITE in response to Dr Julian Tagal, ophthalmologist at Sarawak General Hospital, whose letter “Tried by the court of social media” appeared in The Star on June 14.

Firstly, I would like to offer my sincere condolences to Joel Neo’s family.

My daughter, like Joel, had Acute Necrotising Encephalopathy (ANE) at 11 months old. My daughter survived.

Dr Tagal, in his letter, concluded by saying, “Lastly, let us, as a professional fraternity, examine ourselves and our methods for weaknesses and mistakes” and “Help us to help ourselves”.

I would like to offer my help. Yes, ANE is a disease so rare that many seasoned paediatricians and radiologists have hardly seen or heard of a case, much less managed one. It is not just in Malaysia, however, but a worldwide scenario.

I am part of a patient and carer group for the disease of ANE; we have approximately 30 families from all over the world, including two families from Malaysia. We know there are many more cases worldwide. Almost all our stories read the same – that initial treating hospitals and physicians had never heard of ANE.

Our group is desperately trying to raise awareness among the medical fraternity of the disease which in most cases initially presents with influenza, although other viruses and infections can bring on an attack.

Many children have died from ANE and we would like to think that, through awareness, other deaths may be prevented.

Our group has very recently created a website for ANE with information for newly diagnosed families which includes how the disease presents.

We would very much appreciate if you could share our site to help the professional fraternity to help themselves and thereby help children like Joel and my daughter.

The website is aneinternational. org. Thank you. KIM SMITH Parent of an ANE survivor Australia