Ivan Cameron, son of the British Conservative Party leader, was six when he died last week. His death brought to a sudden and dramatic close a short but intense existence of suffering, frequent hospitalisations and crushed hopes which had hung around him like a dark cloud since a few days after he was born.
Ivan suffered from Ohtahara Syndrome, a very rare epilepsy disorder characterised by frequent epileptic fits, occasionally up to 200 attacks in one single day. In most cases the convulsions are very resistant to the standard medication and as a result the brains of all the infants suffering from this condition function abnormally; most of the time rendering them very floppy, excessively sleepy and feeding poorly thus hardly making any developmental progress. With time they may develop limb spasticity very much akin to sufferers of cerebral palsy. This state of affairs makes them totally dependent on others all their life. Most die in the first two years of life usually because of repeated chest infections or sudden death in epilepsy (SUDEP). Ivan died at six, only a few weeks away from his seventh birthday.
Ironically, Epilepsy Action, UK’s largest member-led epilepsy organisation, launched a report to criticise the service provision for the 58,000 sufferers of epilepsy in the UK a few weeks before Ivan’s demise. The report, entitled Epilepsy in England: Time for Change, was drawn up from a number of surveys sent to all primary care trusts and acute trusts in England and was presented in the House of Commons in front of members of Parliament, members of the House of Lords, health trusts and people with epilepsy.
As Epilepsy Action’s president, Baroness Ford of Cunninghame stressed: “The health trusts are unlikely to be able to provide decent epilepsy services when they don’t even have many of the resources underlined as critical in the 2008 NICE commissioning guide” like short time frames for first appointments and access to specialists’ care and diagnostic tests.
Luckily, although our health system does not function as efficiently as Willie Wonka’s chocolate factory, it still gives a better deal to the 3,000-odd sufferers of epilepsy that inhabit our islands in the form of free medication and specialist care, even though there is much room for improvement. In my opinion it has failed them mostly in the day to day support and education about the condition but that’s where Caritas quickly moved in by setting up CMEA or The Caritas Malta Epilepsy Association in 1996. CMEA is a non profit making organisation affiliated with WHO’s International Bureau for Epilepsy and which works closely with the Department of Clinical Pharmacology and Therapeutics at the University of Malta and The Epilepsy Society of Malta, a professional organisation housing most of the specialists in the field of neurology. The aim of the organisation is to promote education and local awareness especially in the face of the stigma suffered by most of the sufferers of epilepsy particularly in the employment market, by campaining for better health services, treatment and social acceptance of epilepsy as a serious yet treatable brain disorder.
This campaign forms part of a worldwide campaign – Epilepsy Out of the Shadows, which is exactly where our stigma and ignorance about this condition has thrown our perception of it.
Living with epilepsy is no piece of confectionary as any person suffering from this condition or any parent or partner of an epileptic individual can tell you. I myself have witnessed quite a number of attacks in my career and despite my experience in dealing with convulsions. Epilespy is a chronic neurological disorder caused by a sudden excessive electrical discharge in a group of brain cells or neurones resulting in recurrent seizures which range from brief lapses of attention or isolated muscle jerks to severe and prolonged convulsions associated with loss of consciousness, involuntary jerking muscle movements, incontinence, tongue biting and frothing at the mouth. The attacks are usually pre-empted by an aura and may last from some seconds up to 15 minutes depending on the severity. Seizures lasting for more than 30 minutes are called status epilepticus which is a medical emergency as it can lead to irreversible brain damage and loss of life. The affected individual has no recollection of the attack once this is over but usually feels dazed and unwell for some time after. The type and severity of the seizure depends on the area of the brain that is affected and how far the abnormal electrical discharge spreads.
Most seizures are effectively controlled by treatment which allows most epileptics to lead a normal life; however the suddenness and unpredictability of the attacks limits them in certain activities like driving, operating machinery and participating in certain sports. And that is all there is to it for most of them. Unfortunately, however, even though we have grown out of the ridiculous notion of a satanic possession, most of us, especially in the employment sector are still very wary of this medical condition and it is this stigma that organisations like CMEA are trying so hard to overcome.
All these people need and deserve is a sterling standard of care to have their brains protected as much as possible from any abnormal electrical activity and then simply allowed to get on with it and lead a normal life even if with some limitations tagged to it. A disease is, after all, part of a person, certainly not all of him.
Ivan Cameron left behind a beautiful aura of love and unity just by his mere presence even if he needed constant medical care 24/7, and that should be a lesson to all of us.

Source: Weekender, March 7, 2009