Why are there so few useful books on Narcolepsy?

Here’s a question for all of you: why are there practically no useful books on Narcolepsy?  (I could extend this question to: why are there so few helpful in-depth Narcolepsy resources out there, but I’ll save that one for a later post…)

I can’t even tell you how many times I’ve searched for books on Narcolepsy, hoping to learn more about the disorder and everything that goes with treating it.  Every time I do the search on Amazon for Narcolepsy, I think to myself, maybe this time something new will come up, as if I could make more books on Narcolepsy appear through the simple act of searching on Amazon.  But every time since I first started looking during my junior year of high school, only two new books on Narcolepsy have appeared on Amazon, giving us a whopping total of four books on Narcolepsy.

That’s right, four non-fiction Narcolepsy books currently in print.

You might say, but four doesn’t sound like such a bad number for a book on a rare disorder, right?  Except that the number is misleading. 

Unfortunately, we’re not talking about four wonderful useful books on Narcolepsy.  We’re talking about four books on Narcolepsy with some big problems.  Basically, they all have one or more of the following issues: a) they sound like something out of a medical journal that would probably only be useful to a doctor, b.) the information in them is outdated, with two of them being at least 14 years old (i.e. they’re ancient), or c). the information in them isn’t comprehensive and doesn’t go much beyond the basics you find on the Internet.  In an ideal world one of these books would be Narcolepsy for Dummies (I like the Dummies and Idiot’s Guides), but unfortunately I have yet to find anything that comes close to the sort of resource you would expect to find on any given medical condition (unless it is extremely rare).

(And no, Narcolepsy is not THAT rare.)

Let’s take a look at each of the four and see what we have here.

Our first book is Narcolepsy: A Funny Disorder That’s No Laughing Matter.  This book is probably the best of the bunch, combining some information on Narcolepsy with the personal experience and stories of the author.  Back when I read it in the late 90s, I didn’t learn anything new from it and I found it to be rather depressing.  Having read the book over ten years ago, I don’t actually remember much of it except that I thought that the book gave the distinct impression that Narcolepsy had ruined the author’s life (hence, my comment about it being depressing).  However, having said that, I have heard other Narcoleptics say good things about it, although I get the impression that the book would mainly be useful if you were recently diagnosed or didn’t know much about Narcolepsy or if you had never heard about other patient experiences. 

All in all, it’s not a bad book.  It’s the only one of the four with more than 1 review and a positive rating on Amazon (4.5 stars with 11 reviews).  Clearly, some Narcoleptics like the book, so this would be the one I would recommend if I had to recommend a book.

Unfortunately, even if this is the sort of book you are looking for, the book is ancient, which is something a book on a medical condition can’t afford. 

I’m sorry, but the book is 15 years old (!).  If I had it here next to me, it would be crying out, “Please update me!  I’m so outdated I want to cry.”  So it’s fortunate that I don’t have a copy here, lol. 

To give you an idea of how ancient this book is: the two best and newest medications for Narcolepsy didn’t exist when this book was written.  So the author talks about Narcolepsy and cataplexy, yes, but she can’t talk about Provigil (released in 1996), Xyrem (released in 2002 for cataplexy, more recently for just EDS), or Nuvigil (released very recently).  If this was a conversation about Narcolepsy treatment and the book was a person, the book wouldn’t have much to say.

Second, we have Psychosocial Aspects of Narcolepsy, which is basically a compilation of (14 plus year old) medical articles on Narcolepsy.  I only skimmed this book many years ago, but it basically outlines all the problems a Narcoleptic might have in language that makes it clear that the audience is not your average patient (it sounds like a bunch of medical journal articles).  It might actually be useful to read, perhaps it has a few useful pieces of information, but it definitely doesn’t have much on treatment and it isn’t intended for patients.  As I mentioned before, it also has the same issues as the first book, in that it is very much out of date.

Finally, we have two newer books, neither of which I have read but neither of which look particularly promising (at least not promising enough that I would bother to buy it).  One is called Narcolepsy Medical Guide, published in 2008.  I can’t say how useful it is, but I’m not especially impressed at a glance: the book has zero reviews, zero used copies, and a cover that makes it look like it was self published.  I haven’t heard of anyone reading it before, and it feels a bit wrong to judge a book that I haven’t read, so if anyone has read it let me know what you think.

And then we have The Official Patient’s Sourcebook on Narcolepsy, which gets points for being published in 2002.  I haven’t read this one either, but according to its only Amazon review, which gave it one star, the book doesn’t sound like it was written with patients in mind and some of the links no longer work.  This might be an interesting one to read, however it sounds like it would be more useful to doctors than to patients.

Which brings me back to the topic of my post.  Yes, there are some books out there but none of them are especially outstanding.  As I mentioned before, I just find it hard to believe that there isn’t a comprehensive, well written book on Narcolepsy for patients out there that goes beyond the basics.  I’ve been expecting such a resource to be published for over 10 years now, but I’m still looking.

Am I asking for too much?

Sure, Narcolepsy is a rare disorder, but it affects at least 150,000 Americans and is serious enough that I expect a lot of people would be interested in reading more about it to help themselves or their loved ones better cope with Narcolepsy.

I know that some Narcoleptics have trouble staying awake while reading a book, but surely many of us still read, even if it’s not a lot?  And regardless, surely a lot of us would want to read more about Narcolepsy and how we can feel better?  Lol, it sounds like a silly question, but I have asked myself this many times in trying to figure out why there are so few non-fiction books on this disorder.  There has to be a reason, right?

What do you think?  Why are there so few Narcolepsy books out there?  Do you disagree with my assessment of the books?  (Was one of them helpful to you?)

Don’t be shy! :-)