Although the causes of epilepsy may be tiny, the problem is hugeGerry Shaw

When I think about global health, I learn about my own intellectual cowardice. I don’t like approaching the subject, mostly because – for a research-oriented individual – the issues can be overwhelming. Even if the academic community makes a scientific breakthrough and develops some ideal clinical drug, how can we then go about administering this life-saving discovery to regions of the world lacking medical infrastructure, personnel and money? In the face of indifference, how can we convince people to care? Epilepsy – the condition I study – is a prime example of the challenges facing global health professionals.

To have this discussion, it’s important to know about epilepsy’s effects. Seizures themselves can and do kill people – either directly or indirectly, as when someone seizes while swimming and drowns. Epilepsy also leaves its mark on quality of life. For children, recurrent seizures are developmentally disastrous. Without treatment, infants with severe epilepsy won’t learn to walk, talk, dress themselves or reach any other developmental milestones on time or ever. This devastates the parents as much as the child. Seizures are a tremendous stress on day-to-day life. With the constant risk of losing control of one’s body at a moment’s notice, it is unsurprising that people with epilepsy have higher rates of anxiety and depression. People with active seizures cannot drive, which contributes to their high unemployment.

Add up these effects on individuals fifty million times over, and you get a sense of epilepsy’s global burden. Epilepsy disproportionately afflicts the developing world. Recurrent seizures are, in a general sense, the result of abnormal signalling between cells in the brain. Therefore, anything that can damage or alter the brain can lead to seizures. Conditions in the developing world make these insults more common. With less access to maternity care, newborns are more likely to suffer birth complications such as perinatal stroke – a major cause of epilepsy. Fevers from aggressive infections, parasites, malnutrition and brain injuries can all result in seizures.

Seizures are also staggeringly difficult to treat in these regions – an estimated 90 per cent of cases in the developing world receive no treatment. Epilepsy is a chronic disorder requiring long-term treatment. There is, however, a major shortage of qualified epilepsy physicians. According to one estimate, there is only one neurologist per 10 million people in Sub-Saharan Africa. Furthermore, roughly a third of patients cannot benefit from anti-epilepsy drugs at all and instead need brain surgery. Even by neurosurgical standards, epilepsy surgery is invasive, intensive and very expensive – typically requiring multiple brain scans, exploratory surgeries, overnight observation with electrode placement, and more. These procedures are difficult to perform outside specialized centres, let alone in rural Pakistan.

While epilepsy is a problem of serious concern in the developing world, it has hardly been solved in the developed world. The standard of care in the UK, US, and mainland Europe is far from where it needs to be. This is, to a large extent, simply because people don’t seem to know or care about epilepsy. As a case in point, UK medical charities in 1998 raised 290 million pounds for cancer, 9 million for leprosy, and a mere 1.2 million for epilepsy.

I realise I’ve painted a rather grim picture. I suppose it has to be that way – there are so many diseases in the world, all desperate for attention and funds. None of what I have written is to convince you progress hasn’t been made or isn’t being made. Much of what needs to be done is for people who, unlike me, spend their time outside of the lab, working to raise money or awareness or to deliver the treatments we already have where they are needed. I hope this persuades you to think a little more about epilepsy – an often invisible and forgotten condition that could really use support from new volunteers.