I am around many epilepsy patients in my training as a neuropsychologist and I wanted to further educate myself on the subject. I discovered that there weren't too many books to choose from. This is strange since there are more than 10 million young people with the disease. The prevalence of the disease in the teenage years is 6 - 7 people in 1000, and the lifetime incidence is approximately 3% (the number usually quoted for autism, which evidently has a much better PR campaign, and it is significant to note that epilepsy has a much higher mortality rate). I read Epilepsy in Childhood and Adolescence by Richard Appleton and John Gibbs in my effort to become better informed and was disappointed. The slim volume is six years out of date, priced at more than $50 (which comes out to $3/page) and is barely more than a outline. I felt like I was reading a Cliff notes to prepare for an exam. There was little if any effort given to narrative story telling. This is strictly the facts 'mam, delivered with bullet points in medicalese. I don't recommend it unless you are very familiar with medical terminology. It was an education, however, to have driven home to me the disproportionate awareness that the public is given for some diseases but not others not due to mortality or morbidity but simply because of money, lobbying efforts, and perhaps sheer sex appeal. Although, epilepsy, like autism, has a wonderful novel dedicated to the cause that I wrote about here it has not gained popular "appeal" yet. I don't necessarily wish that for the cause, but I would like to see serious book-length work of science devoted to this condition, which is in a certain way, a case of excitability (something we need to make the nervous system work) gone awry. A good work of science would have ample length to explore the history of the illness, the notion of what constitutes the normal range of excitability, and why deviation from that norm results in catatonic like episodes for some and jerks and fits for others, although both can lead to devastating brain damage. On the one hand I'm interested to read it, but if they take too long, maybe I'll just have to write it.
Wednesday, June 30, 2010
Making noise about your cause (Books - Epilepsy in Childhood and Adolescence by Richard Appleton and John Gibbs)
I am around many epilepsy patients in my training as a neuropsychologist and I wanted to further educate myself on the subject. I discovered that there weren't too many books to choose from. This is strange since there are more than 10 million young people with the disease. The prevalence of the disease in the teenage years is 6 - 7 people in 1000, and the lifetime incidence is approximately 3% (the number usually quoted for autism, which evidently has a much better PR campaign, and it is significant to note that epilepsy has a much higher mortality rate). I read Epilepsy in Childhood and Adolescence by Richard Appleton and John Gibbs in my effort to become better informed and was disappointed. The slim volume is six years out of date, priced at more than $50 (which comes out to $3/page) and is barely more than a outline. I felt like I was reading a Cliff notes to prepare for an exam. There was little if any effort given to narrative story telling. This is strictly the facts 'mam, delivered with bullet points in medicalese. I don't recommend it unless you are very familiar with medical terminology. It was an education, however, to have driven home to me the disproportionate awareness that the public is given for some diseases but not others not due to mortality or morbidity but simply because of money, lobbying efforts, and perhaps sheer sex appeal. Although, epilepsy, like autism, has a wonderful novel dedicated to the cause that I wrote about here it has not gained popular "appeal" yet. I don't necessarily wish that for the cause, but I would like to see serious book-length work of science devoted to this condition, which is in a certain way, a case of excitability (something we need to make the nervous system work) gone awry. A good work of science would have ample length to explore the history of the illness, the notion of what constitutes the normal range of excitability, and why deviation from that norm results in catatonic like episodes for some and jerks and fits for others, although both can lead to devastating brain damage. On the one hand I'm interested to read it, but if they take too long, maybe I'll just have to write it.
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It's interesting how some diseases get a disproportional amount of attention - or that we even have to think about them in terms of proportionality. As a parent of a child who was born with an "orphaned disease",e.g. one rare enough to not get much in terms of research finds, I understand why advocacy groups must rely on good - no, great - PR to get attention and funding. It creates a skewed view of those diseases that are well known causes.
A few years ago, I was walking through Riverside Park w a friend, talking about a cartoon in the New Yorker where a doctor says to a patient something to the effect of "Good news. There's a marathon for your disease". As we were talking, I looked down to see the remains of chalk markings for a "Race From Obesity". Couldn't help but laugh - at least it wasn't a race FOR obesity. :).
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