Saturday, January 10, 2009

Books about Behcet's disease (besides my own)

If you're serious about setting up your own library of Behcet's-related books, it's good to know what's out there. What do you get for your money?

Here are some Behcet's books that are currently available on

  1. Behcet Disease Medical Guide by Qontro Medical Guides ($9.99)

    This new book is actually the reason why "Books about Behcet's" is the subject for today's post. Why? Because this book is relatively cheap ($9.99), and any book about BD in this price range is rare. That would account for it being (as of today) one of the top three best-selling books about Behcet's. This Qontro Medical Guide is rare for another reason, though: Even though amazon lists it as being "in stock," it has never actually shown up on amazon's shelves to be shipped to customers. I wanted to review it, so I ordered it about a month and 1/2 ago. It still hasn't arrived at my house, and amazon keeps extending the "expected delivery date."

    So I went online to find out more about the publisher. It turns out that Qontro itself has no web presence at all (usually a bad sign). When I contacted amazon for more information, the only thing they'd tell me is that Qontro hasn't been responding to their emails.

    Qontro has other medical guides besides the one for Behcet's -- many of them are for rare diseases, just like BD. And Qontro also publishes guides under the label of "Qontro Business Profiles." How many books have they created? According to amazon, they've published 439 guides, and every one of them was released on July 9, 2008. Yikes. So Qontro is a publishing mill, and not a very good one at that.

    Having Behcet's is frustrating enough without waiting for amazon to deliver a BD book that may never show up. Don't waste your time trying to order it right now. If it ever comes in, I'll review it here and let you know if it's worthwhile.

  2. The Official Patient's Sourcebook on Behcet's Disease: A Revised and Updated Directory for the Internet Age ($28.95)

    Here's the review on this book that I originally posted at

    Don't buy this Patient's Sourcebook expecting to find a lot of content that's specifically about Behcet's disease. There are 119 pages in the book, and only 14 of those pages have direct and (somewhat) useful info on BD. The BD info that does appear includes an incomplete listing of available informational websites on Behcet's (one of which is incorrect, a hazard of Internet-related books), with a few reprinted journal abstracts and a clinical trial writeup thrown in to give the impression that this book is more about Behcet's than it really is. The short section on "What Research is Being Done?" has no direct information on current Behcet's research at all, instead referring readers to a few US government health institutes/organizations. The "Books on Behcet's Disease" chapter lists many books that are out of print or severely outdated, and misses the chance to include a couple of good patient resource books that are currently available through and the American Behcet's Disease Association. Looking at the publisher's website, I saw that the people who put this book together have produced several hundred different Patient's Sourcebooks on every imaginable, rare disease. While I haven't seen any of the other books, the format of this one makes me think that they use the same basic outline (and probably a lot of the same pages) to produce each one -- just inserting the name of the "disease of the day" into specific slots in each chapter. It would be better if the authors had created only one book instead, and called it "The Official Patient's Sourcebook on Using the Internet to Find Medical Information."

    If you've never done any medical research on the Internet, then you might find this book useful. There are listings of health-related web sites, and info on accessing medical search engines. But there's also a lot of "padding" in the 52-page Appendices (which is almost half the book): sections on how to use the web to research whatever medications your doctor has prescribed; an overview of good nutrition; a section on how to find medical libraries in your area; and info on "your rights as a patient" and how to choose a medical insurance plan. The creators of this medical series have come up with a great marketing/publishing idea by putting out books about diseases that most people have never heard of -- I just wish this book actually contributed to the BEHCET'S literature.

  3. Behcet's Disease: A Guide to its Clinical Understanding ($167 amazon Kindle edition, $249 used hardcover)

    This is one of the best clinical books on Behcet's that's available -- or it will be until Dr. Yusuf Yazici at the Behcet's Syndrome Treatment Center in NYC finishes the Behcet's book that he's been working on. (And no, I don't have any idea when it will be published.) When this book was first published in 2001, though, it had the best collection of pictures of Behcet's symptoms that I'd seen (including shots of oral/genital ulcers, various skin lesions, and pictures of positive pathergy test results). Of course the Internet has caught up in the last few years, by making graphic medical images available to anyone with good search skills and a lot of patience (and a strong stomach). So the images aren't as critical as they used to be, but the content is still comprehensive.

  4. Behcet's Disease: A Contemporary Synopsis ($50 new, approx. $25 used)

    "Contemporary" is in the eye of the beholder. This 320-page, classic reference book was originally published in 1988, but it's still a great resource today. One of the three authors was J. Desmond O'Duffy, one of the early Behcet's specialists and researchers at Mayo (MN) in the U.S. The Contemporary Synopsis is a comprehensive, exhaustive compilation of worldwide research study results on Behcet's up until the mid-1980s. When used together with, say, my "Essential Guide to Behcet's Disease," you can get a great overview of Behcet's research up until 2002. (And yes, I'm hoping to -- someday -- put out a second edition of the Essential Guide.) It's easy to dismiss research that was done in the 80s and earlier -- but don't make that mistake. Information on treatment methods may be outdated, but descriptions of symptoms, and BD's effects on systems of the body, don't go out of date.

  5. Immunology of Behcet's Disease ($72, amazon Kindle edition, $100 hardcover)

    A book that's primarily for physicians, and any patients who may enjoy reading about the chemistry/immunology that's behind the scenes. Published in 2003. It also includes three short chapters with information on some of the early uses of anti-TNF drugs and interferon in the treatment of BD.

  6. Adamantiades-Behcet's Disease ($219 new, $164 used)

    This book is a compilation of the research studies presented at the 10th International Conference on Behcet's in Berlin in 2002. Some of the information has never been published in medical journals, which makes it valuable when searching for information on some symptoms/treatments. I've found it useful in my work, but it's too expensive to recommend as a general resource.

  7. Behcet's Disease (by Wechsler and Godeau) ($293 new, $23 - $174 used)

    Another compilation of research studies, this time from the 6th International Conference on Behcet's, in Paris in 1993.

  8. Behcet's Disease: Inflammatory Disease and Therapy ($329 new, $32 used)

    Another compilation, from the 5th International Conference on Behcet's, in Minnesota in 1989. Put together by J. Desmond O'Duffy.
The books I've listed above are the primary ones that you'll come across when searching for Behcet's resources on (Plus my own books, the Essential Guide to Behcet's Disease, and You Are Not Alone: 15 People with Behcet's.) I've left out the names of at least six other books that I have in my private library: It's hard to get hold of most of them, and the earliest one dates back to the 1960s. All of them are compilations of research presented at other International Conferences.

One Behcet's resource that I'm still searching for is one that may not even exist:
Behcet's Disease by M'Hamed Hamza, supposedly published in 1992. I've contacted the publisher (no info available) and have never been able to reach the author, who may be deceased. If anyone has any information, please let me know!

Happy reading :-)