Myths and mysteries have surrounded the understanding of epilepsy since Roman times when Julius Caesar was said to have had seizures. The falling sickness, as it has been called throughout the centuries, has brought with it massive misunderstandings and misconceptions. It has been met with major fears and prejudices right up to the present day, as Colin Grant discusses in his new book A Smell of Burning: The Story of Epilepsy.
One example of these prejudices that Grant gives early on in his book is to do with marriage. In Britain, under the Matrimonial Causes Act 1937, a marriage could be made invalid due to epilepsy. The marriage could be ended if ‘either party was, at the time of marriage, of unsound mind, mentally defective or subject to recurrent fits of insanity or epilepsy’. And while Britain got rid of this so-called epilepsy law in 1970, similar laws still remain active in some countries, he writes.
Ignorance of the root causes of epilepsy has fuelled the prejudices and stigmas attached to the condition over the centuries, and they still continue today. I think this is a core issue and needs to be mentioned, and the book goes a way to highlight this.
As well as exposing prejudice and stigma, Grant’s book provides a burst of intellectual energy in attempting to provide a detailed history of the condition. This includes medical developments and understanding the causes of epilepsy, as well as superstitions and the treatment of people with the condition over the years. Along with this, the author offers an intimate personal account of his own tragic experience with his younger brother Christopher’s epilepsy. Christopher’s epilepsy started in his teens, and went on to present itself in almost every aspect of his life.
For me, the beauty of his book is that Grant provides useful information on this somewhat misunderstood subject. It refers to people throughout history with suspected epilepsy, offers statistics and reveals glimpses into the size of the ignorance problem.
Mixed in with his brother’s tragic and emotional story, the details Grant presents on high-profile historical and current figures with epilepsy offer interesting insight. From Julius Caesar and Joan of Arc, to Fyodor Dostoevsky, Vincent Van Gogh and Neil Young, Grant uncovers many well-known people said to have epilepsy. Sharing these often hidden tales may give comfort to the estimated 60 million people with epilepsy worldwide (or about 1% of the global population).
After looking at the history of epilepsy, Grant, a former medical student, concludes by discussing today’s treatments. He explains that while 40 different types of epilepsy exist across a very broad spectrum, there is no cure for the so-called sacred disease. Listing the many unanswered questions about epilepsy causes and medicines, he says that “any pharmacological advance is hampered by the ignorance of the profession”. He explains that neuroscience does not yet have the answers as to what is going on at the more in-depth levels. He suggests that genetics offers the best hope for new understanding. But Grant highlights that currently, for a third of people with epilepsy, the anti-epileptic medication is not effective, and this agrees with my own experience.
As someone who has had epilepsy for over 50 years, and experiences tonic-clonic (or grand mal) seizures, I have witnessed some progress. But I still take the same medication that I started taking as a child, phenytoin, and I still have seizures. Compared to some of the progress made in other areas, I feel as though epilepsy is still in the medical dark ages.
The book, despite its negative title and lack of optimism, is hugely important for the epilepsy community. It provides a readable and accessible source of sorely-needed, core understanding of epilepsy for people with the condition and the wider public alike. More information is always better.
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