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The man with the memoirs: A review of A Smell of Burning: The Story of Epilepsy by Colin Grant

4 Nov 2016

Stephen Timewell reviews the newly released book A Smell of Burning by Colin Grant who explores epilepsy throughout history and describes the story of his brother Christopher

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.

 

The opinions of authors do not necessarily reflect the views of the charity, nor does the inclusion of an item constitute a recommendation.

Comments: read the 3 comments or add yours

Comments

my epilepsy was the cause of stroke but Ihadno seizure since January 2013 up until now my G.P has given me O.K.to apply for mydriving licence which was taken away once DV L A was informed
my biggest problem is my wife who is against it what can I do Please help
Hope to hear from you Thanks
yours
amarjit

Submitted by amarjit oberai on

Hi Amarjit

Thank you for your question.

It can be an anxious time going back to driving. And this anxiety can be felt by family members too.

You could show your wife our information on the driving regulations for epilepsy. These regulations are set by the DVLA . The DVLA use medical professionals and research to help with their regulation decision making.

epilepsy.org.uk/info/driving/driving-licences-group-1-rules

Also some people have voluntarily taken a few refresher driving lesion too help them feel comfortable about returning to driving. I wonder if this might help reassure your wife.

If we can be of any more help to you or your wife, please feel free to contact the helpline team directly. You can either by email helpline@epilepsy.org.uk or the Epilepsy Action Helpline freephone 0808 800 5050. Our helpline is open Monday to Friday, 8.30am until 5.30pm.

Regards
Diane
Epilepsy Action Helpline Team

Submitted by Diane, Epilepsy... on

Ignorance about epilepsy exists mainly because the medical community is not involved in creating awareness about it.They are busy harvesting organs and transplanting it and this what they very concerned about and are readily discussing it on the media,but not about epilepsy or mental health issues.Epilepsy will not give these doctors and their hospitals a profitable business,so they are ignoring it as a result of which traditional methods employed by sorccers like beating and burning the patients have become a routine practice in India.Its the medical practitioners like the neurologists,psychiatrists and the physicians who are encouraging such an unhealthy scenario for epilepsy.Moreover these doctors do not know how and when to diagnose a seizure condition.They do not have this condition in their differential diagnoses while evaluating a patient.A stroke case will fetch them a lot of money but not epilepsy.And they do not even have a fair idea about which drug to use and that is the reason why epilepsy appears to be a condition from the dark ages.The problem lies with the doctors who are practicing medicine like black-magic.Epilepsy like conditions are dispensable subjects for doctors.They just skip this topic.Even if its diagnosed late,they can juggle around with all the AED's available.Nobody can sue them,after all its an AED.Who is going to prove that they have selected the wrong AED???The practice standards for diagnosing and treating epilepsy by the doctors are far below average.Late diagnosis and selecting the wrong drug can only aggravate the seizure and make it drug resistant.The practicing standards are dark,please make it white.
Valproate,lamotrigine,topiramate and levitaracetam are also prescribed for tonic-clonic seizures.The last three are newer AED's.If the GTCS is not controlled another drug can be added.

Submitted by Ramesh on

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