Case in point: the release last week of a research report on exciting new progress in gene therapy for hemophiliacs.

Back in 2001, I wrote a book on hemophilia for the Enslow Publishers series Diseases and People (<brag>School Library Journal called it: “An excellent resource for basic research for personal or academic use.”</brag>).

Gene therapy—the insertion of genes into living cells in the human body to treat disorders—has always seemed to hold particular promise for the treatment of hemophilia because it is a genetic disease: you can’t catch it, you can only inherit it.

What is hemophilia? Allow me to quote my own book:

“Hemophilia is a disease in which a person’s blood does not clot properly. People with hemophilia do not produce enough of one of several proteins in the blood called clotting factors.  The body needs these factors to stop bleeding after an injury. Without these factors, bleeding lasts longer than it would otherwise…

“Hemophilia affects males almost exclusively. About one in 5,000 boy babies has hemophilia. It is passed on from generation to generation by women who may or may not show bleeding-related symptoms themselves. In about one third of the cases, there is no family history of hemophilia…

“The primary symptoms of hemophilia are abnormal bruising and bleeding. In toddlers, falls and bumps may cause skin bruises and bleeding from the lips and tongue. In older children and adults, bleeding may involve muscles and joints, producing painful swelling and hindering movement. If early treatment is not given, this bleeding can result in permanent joint damage.  Head injuries are particularly dangerous for hemophiliacs…bleeding into the brain can be fatal. Bleeding may also occur in the face, neck, or throat, obstructing breathing. Bleeding from the mouth, gums, and the nose may be troublesome, as well…

“The standard treatment in the event of bleeding is to inject the hemophiliac with the missing blood clotting factor, made from either donated plasma or by using recombinant gene technology. This can be done on a regular preventative basis, usually three times a week, just before undertaking an activity that could cause bleeding, or as needed to treat episodes of bleeding…

Hemophilia is, in short, a nasty condition indeed. Prior to the First World War, the average lifespan for a boy with hemophilia was 11. Prior to 1968, it was only 20. By 1983 it was 64…but during the 1980s it dropped again due to the impact of AIDS, which hemophiliacs contracted through the injection of blood clotting factor made from donated, infected plasma (young Ryan White, who graces the cover of my book, was one of the most high-profile victims).

Since 1999, the average lifespan has been normal, but treatment still involves regular injections of clotting factors.

The only way to cure hemophilia would be to replace the missing genes that code for the production of clotting factors…and that’s precisely what researchers from the University College London Cancer Institute and the St. Jude Children’s Research Hospital in Memphis have just reported success with.

Their technique used a modified adeno-associated virus, or AAV (which infects human cells but doesn’t cause disease) to insert the gene which produces clotting factor IX (FIX), into liver cells. Their test subjects were six people with severe Hemophilia B. (About one in five people with hemophilia have Hemophilia B; the more common Hemophilia A, which involves a different clotting factor, offers a more complex target for gene therapy, so much of the research has focused on Hemophilia B.)

Before the therapy, the six patients all produced FIX at less than one percent of normal levels. After the therapy, each produced FIX at between two and 11 percent of normal. In the short-term follow-up of six to 16 months, four of the participants no longer needed infusions of FIX at all, while the other two required them less frequently than before.

Molecular Therapy magazine, reporting on preliminary results of the study back in March, enthused that it represented nothing less than the “holy grail” of hemophilia gene therapy.

It also renders my 10-year-old book out-of-date. But you know what? After researching all the tragedy and suffering hemophilia has caused down through the years, I’m okay with that.

I just hope all the other books I wrote, on Alzheimer’s disease, arthritis, meningitis and Ebola, are also rendered obsolete—the sooner, the better.

The first book was Meningitis. Stiff neck? You bet. Of course, I was sitting and typing for hours on end, but I’m sure that was just a coincidence. I also wrote Arthritis (my fingers are still stiff), Ebola Virus (Ebola starts with flu-like symptoms; gee, thanks, that’s specific!), Alzheimer’s Disease (which I can barely even remember writing) and Hemophilia, which at least had the advantage of being a genetic disorder that you’re born with, so it wasn’t anything I could catch.

But just because I’m not writing books about diseases any more doesn’t free me from the tendency to suspect that every minor symptom that crops up could be the sign of the fatal disease or debilitating condition I’m always sure is lurking around the next birthday. (And yes, I did turn 50 a couple of years ago…why do you ask?)

Headache? Brain tumor! Tingling sensation? Multiple sclerosis! Itch? Incurable skin infection!

What I’m really suffering from, of course is cyberchondria: hypochondria exacerbated by the plethora of medical information available, just a few keystrokes away, on the Internet.

This is so common a condition that there’s a Wikipedia entry for it, and where better to turn to information about an Internet-fueled problem than Wikipedia?

Hmm. On second thought, let’s turn to the New York Times.

In an article dated November 25, 2008, John Markoff wrote about the results of a study, conducted by Microsoft, of health-related Web searches on popular search engines, combined with a survey of the company’s employees. “The study,” Markoff wrote, “suggests that self-diagnosis by search engine frequently leads Web searchers to conclude the worst about what ails them.”

Well, duh. But why?

Which isn’t to say you should ignore symptoms, of course; but you shouldn’t jump to conclusions, either. Star Trek: Voyager may have featured a computer-generated doctor, but for the moment, you’re better off going to the real thing.

Oh, and avoid writing books about diseases. That’ll help, too.

The photo: December hoarfrost, Regina, Saskatchewan

Here are the covers (and the back-cover copy) for each:

Johnny Cash: The Man in Black

When country music legend Johnny Cash took the stage at Folsom State Prison in 1968, he solidified the public’s perception of him as a rebel who followed his own path. Born in Arkansas during the Great Depression, Cash endured poverty, the death of his older brother, and a difficult relationship with his father. He turned to gospel and country music to express the pain, and after many years of struggling, his songs of hardship and hope would finally reach the ears of those waiting for an artist who represented them, ordinary people fighting to survive.

Johnny Cash’s career spanned almost fifty years, with thousands of songs, hundreds of albums, and even a telvision show to his name. Even after his death in 2003, new albums continue to be released, and the 200t bipic Walk the Line brought “the man in black” to life for a new generation. From spiritual hymns to rock ballads, his influence transcended all genres and “the voice of America” lives on.

Buy Johnny Cash: The Man in Black from Amazon.com.

Andy Warhol: Everyone Will be Famous for 15 Minutes

In the 1960s, Andy Warhol became the most famous creator of a new style of art called pop art, which transformed mass-produced items of popular culture into fine works of art. From Campbell’s Soup cans to photographs of Marilyn Monroe, Warhol’s willingness to use anything and everything from the mass media in his work expanded the range of subject matter available to artists. His avant-garde films, artistic usage of American icons, and unconventional social life made him a controversial figure, both greatly admired and deeply reviled. A trendsetter rather than a trend-follower, a dispassionate observer of both the seamy and celebrity sides of life, Warhol was a true American rebel.

Buy Andy Warhol: Everyone Will be Famous for 15 Minutes from Amazon.com.

Narrator Ezra Knight

Narrator Ezra Knight does an absolutely fabulous job, not surprising considering what an accomplished actor he is. In fact, as I started listening to the book, I had to get out my print copy because it sounded so good I actually thought they must have rewritten the introduction–but no, those were my words!

According to a letter the publisher sent along with the two copies of the audiobook I received, this is the first Enslow Publishers title to be recorded as a full audio book. I feel honoured!

Also, I’m really enjoying listening to my own book. I usually read my own stuff out loud. Nice to hear someone else for a change!

“Science is a verb.” that is what science teachers tell their students, and this book describes just that. I found the book to be an exciting collection of seven scientists doing their jobs, and sometimes I was jealous. As scientist, Marta Guerra, describes, “for people who like to do fairly exciting things… you feel like you are actually helping people, [disease hunting in Uganda] is a wonderful experience.” The book is scientifically accurate, and, with a bird flu expert hinting about new emerging pandemics, the book is very current. It is engaging and packed with a great deal of information. The Levels of Containment that we often read about describes measles as a level two disease, where gloves, face protection, gowns, and splash guards are used. It is a good thing that our mothers never knew that. For your information, E. coli is only level one. If you did not know what bat guano is, the explanation is seamlessly woven into the text. Zoonotic is a word I have been hearing more about, and this book teaches young readers what it means: diseases that can be transmitted between animals and humans. Scientist Laurie Richardson says that “being a scientist is like being a kid all you life” because there is so much fun and learning to do. Scientist Jonathan Runstadler’s job is to track the bird flu. To do that, he swabs bird bottoms, which may not sound like fun, but, for people such as me, it beats sitting in a cubical working on spreadsheets. This is a great read. Reviewer: RevaBeth Russell

Here’s the description from the back of the book:

“The Bounty was a British ship visiting Tahiti in 1789 when some of the crew overthrew the captain, William Bligh, and set him adrift in a tiny boat with sailors loyal to him. The mutiny resulted in a number of trials—both of the men who mutinied and of Bligh for losing command of his ship. These fascinating events have been the source for numerous Hollywood movies, most recently The Bounty. In The Bounty Mutiny: From the Court Case to the Movie, Edward Willett explores the famous case and the movies it inspired.”

There’s also a nice blurb:

“The mutiny on the Bounty is one of the most misunderstood events in maritime history. Here, Edward Willett reveals the true events behind that episode, and attempts to explain why these have been obscured from popular memory by filmmakers who rarely let the facts get in the way of a good story. But, as Willett shows, the truth—if less romantic than fiction—is equally fascinating.” – Timothy G. Lynch, PhD, Assistant Professor, Maritime History, California Maritime Academy, California State University.

I daresay it’s the only book I’ll ever write which has Mel Gibson on the cover!

Here’s the blurb from the back:

Working from high-tech labs in Canada or remote villages in Africa, epedemiologists travel the world trying to keep us safe from deadly diseases. Learn how these “disease detectives” are coming up with new wayts to fight disease, and find out if you have what it takes to become an epidemiologist, too!

I’d seen that before. What I hadn’t seen, until the books arrived today, was this very nice cover quote from Jonathan M. Samet, MD, Professor and Flora L. Thornton Chair, Director, Institute for Global Health, University of Southern California, Los Angeles (quite the title!):

“This book captures the excitement and significance of epidemiology and the hard work of being an epidemiologist. It is a great starting point for those who want to benefit world health by becoming an epidemiologist.”

Very nice. And now that I have my author’s copies, I can get the book entered into the Saskatchewan Book Awards before the first deadline of July 31.

Dr. Laurie Richardson, Professor of Biology at Florida International University in Miami, is researching black-band disease in coral reefs—which means she spends a lot of each summer scuba-diving, often for hours a day.

At 287,231 square kilometers, coral reefs are less than a tenth of a percent of the total ocean floor. But they support more than a million species of marine life. They are also dying, from pollution, overfishing—and black-band disease, among others.

Dr. Richardson started her career researching “microbial mats,” communities of microbes that live in the sulfur-rich water of hot springs. She then worked in Wisconsin on a NASA project that used satellite data in the study of aquatic ecosystems. That led to three years at NASA’s Ames Research Centre in California learning remote sensing and image processing, which in turn landed her in Florida with a NASA-funded grant to work on algal pigments and remote sensing.

One day, while she was diving for fun on a coral reef, somebody showed her an example of black-band disease-and she immediately recognized it as similar to the microbial communities she’d studied in hot-spring outflows.

She looked in the scientific literature, and no one else had made that connection. And that was how the research she’s now been doing for more than 15 years began.

Like most scientists, Richardson spends most of her time writing papers and proposals, teaching, or in her laboratory, but about ten percent of the time, mostly in the summer, you can find her diving with graduate students, undergraduate students, and research collaborators, collecting samples and monitoring the progress of disease on the reef.

Coral samples are taken with numbered, sterilized syringes. The divers record on underwater slates the number of the syringe, what the sample is, and a description of the diseased coral. Evenings of the ten-day-long diving expeditions are typically spent transcribing information from the underwater slates into a database or field notebook.

Most of the time the diving itself is fun. But not always. On one occasion, Richardson suffered the bends (an extremely painful condition caused by bubbles of dissolved nitrogen forming in the bloodstream as the diver surfaces). On another, a sudden strong underwater surge reduced visibility to nothing and threatened to sweep her and her students away from the boat into the Gulf Stream.

Corals consist of an extremely thin layer of living tissue (often less than a millimeter thick) over a rock-like skeleton of calcium carbonate. A lot of bacteria live in association with the coral’s surface and can cause a really nasty infection in any cut. Fortunately, Richardson has avoided that particular hazard so far.

As for black-band disease, Richardson says it’s now like a jigsaw puzzle that is maybe seven-eighths of the way filled in. “Anything we figure out now is one more piece of the puzzle, so that is really exciting.”

She’s figured out that as the disease-causing community of bacteria (dominated by blue-green algae) first grows, it consumes the available oxygen, opening the door for another group of bacteria that thrive in an oxygen-free environment, instead using sulfate dissolved in the water. Those bacteria produce sulfide gas as waste, killing coral tissue, which is then devoured by additional bacteria.

Contributing to the problem: a warming ocean. Corals like warm water, but not too warm. For microorganisms, on the other hand, the warmer, the better. As a result, the growth of bacteria and blue-green algae “takes off like a rocket” at the same time that the corals they are living on become stressed. The result is disease.

Richardson’s work may also shed light on human diseases, because many human diseases are also caused by a community of bacteria. In fact, her current funding is from the National Institutes of Health.

And finally, it’s a wonderful teaching model. “I’m a biology professor, and my students are learning all about ecology and physiology and microbiology and molecular genetics while they’re out there in this incredible environment working on the reef.”

From the Enslow blog:

Author Edward Willett tells the true stories of six real disease hunters in this new title in Wild Science Careers series, Disease-Hunting Scientist.

Epidemiologists travel the world trying to keep us safe from deadly diseases—from high-tech labs in Canada to remote villages in Africa. Learn how these “disease detectives” are coming up with new ways to fight diseases!

For more information about this book, visit http://www.enslow.com/displayitem.asp?type=1&item=2672

Enslow Publishers, ISBN: 978-0-7660-3052-7, for grades 5 and up