Did you know that some people are born with their internal organs backward? Or that a particular form of paralysis can be set off by eating pizza? From the files of ABC's "Primetime" show "Medical Mysteries" comes "Medical Mysteries: From the Bizarre to the Deadly ... The Cases That Have Baffled Doctors," by Ann Reynolds and Kenneth Wapner, a collection that examines real-life medical oddities that will shock and amaze you.
The collection puts readers in the examination room as doctors uncover and try to cure the most bizarre of conditions. From the musician who can hear everything inside his body -- even his eyeballs moving back and forth in their sockets -- to the woman who gets seasick -- on land -- this book is sure to take readers to the front lines of the medical fringe, where absolutely anything is possible.
Read an excerpt of the book below.
You See, I Was Supposed to Be A Doctor
Both my parents were physicians, and when I was little, most of the grown-ups I met had "Dr." in front of their names. I absorbed what seemed to be the obvious life lesson: when you grew up, you could be a doctor...or a patient. I knew which one to choose.
But somehow, in spite of being pre-med in college (yes, I even took Organic Chemistry), I ended up in television news. When ABC News decided to do a series on unusual medical conditions, it felt like redemption -- another chance to dip my toe into medicine.
Remember the commercial that said, "I'm not a doctor, but I play one on TV"? That was the intriguing proposition that faced our producing team: without having to get medical degrees, we could try to understand some of the field's greatest puzzles. We could find people with unusual, extraordinary, bewildering medical conditions and tell their stories. And I was that most dangerous of creatures: a civilian with ten cents' worth of medical knowledge, mostly gleaned from my parents' dinner table conversations.
My mother was an anesthesiologist, so her hospital day was done before my father's (internal medicine, specializing in liver disease). Dad would come home from the hospital as we set the table, take off his white medical coat and stethoscope, and we'd sit down to dinner. After a bit of family conversation, the daily game of "What's That Diagnosis?" would begin.
"We had a woman, sixty-three, admitted today with diffuse abdominal pain and delusions," Dad would offer. "Something infectious, I think," my mom would reply, tossing the salad. "Any foreign travel? Did you test for parasites?"
They would bounce possible diagnoses back and forth, my mother always saying, "It's bound to be something more ordinary than that!" My father always held out for the rarer, more interesting condition.
My brother and I ate and occasionally contributed questions. (It's now very, very difficult to gross me out while I eat -- I've heard it all.)
The process of narrowing down -- taking the tiny clues from the patient's symptoms, genetics, the test results and scans, and finding out what was wrong and how to fix it -- was something of a family sport. With the ABC News Medical Mysteries series, I got the chance to revisit the dinner table of my childhood and peek, once again, into the way doctors think and diseases work.
The show struck a chord with television audiences, I think, because we all live in bodies -- we're all wondering if that little ache or that strange sound in our neck could "be something." Perhaps, if you're not in the medical field, some of the syndromes and conditions in this book will seem, well, impossible. Who would guess there could be seizures set off by music alone? Who would think that people who seem completely normal, who have entirely normal vision, might be simply unable to "see" human faces? Did you know that some people are born with their internal organs backwards inside them? Or that a particular form of paralysis strikes only first-time surfers? And another can be set off by eating a pizza? And what kind of medical problem would make a man look as though he was turning into a tree, with "roots" and "bark"?
We're the ones who got to find out and tell you about these incredible things. But as fascinated as we all were by the exotic conditions and inventive medical treatments, the more stories we looked into, the more we realized: these stories were powerful because they happened to people. Normal, ordinary people who live through symptoms they've never expected -- and normal, ordinary doctors who painstakingly unravel diseases and struggle to give their patients relief and, perhaps, even cure them.
All the patients and doctors involved in Medical Mysteries were kind enough to let us into their worlds and take us on their journeys. Most of them did it so that people out there with the same set of problems will know that there's a diagnosis and, of-ten, treatment available to them. It was a privilege to put their experiences in front of the public. As you read through the book, as you picture all the scans, all the tests, all the questions, all the symptoms -- you may end up like our team at ABC News did: just flat-out amazed. With billions of cells and processes and checks and balances inside our bodies --systems we ignore as we read the paper and go to work and drop the kids off at a playdate -- be amazed that it doesn't go wrong more often. Be amazed at how lucky most of are every day -- every healthy day.
-- Ann Reynolds
Chapter 1: The Tree Man
Medical Mysteries Are Fascinating Scientific Puzzles -- you watch some of the smartest, most intuitive people on Earth, in world renowned medical centers, track down the tiny genetic problem or microbe that has wreaked havoc in a human body.
And then there are others that tug at you further -- like the story of the "tree man."
It sounded almost like a fable when we first heard of it: a man in a remote area of Indonesia who seemed to be turning into a tree. Over the course of many years, his face, body, and especially his hands and feet, seemed to become more and more covered with what looked like bark and roots. Was it a medical condition, an exotic syndrome that no one had ever heard of? Was he even real?
ABC News has a reporter based in Jakarta, Margaret Conley, and we asked her to investigate. She set off into the heart of Indonesia. Her report? It was all true, and it became one of the most fascinating cases we'd ever covered, and one that spoke not only to our curiosity about Dede Koswara's medical issues, but to what it means to be able to see past surface appearance to the human being underneath.
A Simple Wart?Dede grew up in a remote village in Indonesia, a three-hour drive and two boat rides from Jakarta. His home is as green and lush as you can imagine -- fields planted with crops, sleepy dirt roads, palm trees, and flowering vines. His family fished for most of their food and lived a simple village life -- no running water or telephones. His mother's name is Engkar (we discovered that in Indonesia, almost everyone is known simply by one name). She says that when he was young, Dede was exactly the same as the other boys in the village, riding his bike and playing soccer with his friends.
Then a simple wart on Dede's teenaged knee seemed to be-come infected -- the family didn't understand why the problem wouldn't go away. He developed additional warts on his face and hands.
"The children teased me," says Dede. "But my family protected me."
As is custom in Dede's village, he married young, before he was twenty.
"When Dede was getting married, he was a normal guy with normal hands and feet," says his father, Ateng. He could do anything with his hands, they told us, and worked building and repairing houses, providing for a growing family. It was after the birth of his first child, a son, Entis,that the warts started to spread; after the birth of his second child, a daughter, Entang, they grew all over his body, and the warts on his hands in-creased in size.
Dede and his family are Muslim -- at the mosque they prayed for him to get better. But Dede's condition only worsened. His legs, face, arms, chest, and especially his hands and feet be-came covered with growths. On his hands and feet, they grew into what looked like roots -- long, curving spurs six or seven inches long. He began to look like the trees surrounding his house.
Dede stopped going to the mosque because people stared at him. In fact, he stopped going out altogether. He could barely lift his hands or feet, which were now about fifteen inches in circumference. He couldn't feed or dress himself, and his parents took him to a local doctor for treatment. They cut off some warts -- to no avail.
"Fifteen days after the operation, they grew back and spread," says Dede's father. The next bit of medical advice? "The doctor offered the solution -- to cut [off] both of his hands," says Dede's mother. "I was so sad."
His parents decided to take Dede home -- no amputations.
A Perfect Storm
His wife asked for a divorce because Dede couldn't work any-more.
"I accepted the decision," his father says. "We weren't angry. As a parent, because I love my son, I said okay, if he wants to move in with us, that's our duty as parents. He came to live at our house." The children went to live with Dede's sister-in-law.
Dede stayed cloistered in his parents' home. His sister went to work to support them. His mother made special shirts for him with ties at the side seams, because his hands, covered with "roots," couldn't fit through a normal sleeve. "I didn't go any-where. I stayed at home," says Dede.
Desperate to bring some money to the family, he did the only thing he could think of to survive: he went to a nearby city, Ban-dung, and begged on the streets.
What happened next, what most people would recoil at, would end up being the key to his medical treatment. Because Dede was about to become famous.
Hanny Enterprises runs a profitable freak show. For 10,000 rupiah (about a dollar), the public sees feats of strength, strange exhibitions of unusual abilities (one performer can eat glass), and gets a look at people whose appearance is outside the ordinary.
Hanny made "Tree Man" a star. "I didn't make any promises," says Hanny. "Rather than [having] him stay home, not doing anything and being a burden to his family, it means that if he joins, lots of people will come and show pity on him and help him."
People flocked to Hanny's show, and doctors were as interested in Dede as the rest of the public. They decided to find out what on earth was going on in his body. It turned out to be a "perfect storm" of dermatology: perhaps the worst case of warts (usually considered just a minor annoyance) known to medical science today, coupled with an unusual inability to fight them off. A common virus (one you've got if you've ever had a wart!) was taking over Dede's skin.
"This is the most remarkable case, the most severe case, I have seen in my career," says Dr. Anthony Gaspari from the University of Maryland, who specializes in immune function of the skin. "I was actually asked by the Discovery Channel to join them and to study this patient and confirm what kind of health problem he had."
So What is a Wart?
A small medical digression: what are warts, anyway?
"Warts are viral growths on the skin, creating extensions of the skin, which have a full blood supply -- they become part of the skin," says New York City dermatologist Dr. Debra Jaliman, an assistant professor of Dermatology at Mt. Sinai School of Medicine. "They can occur anywhere. Warts are caused by the human papilloma virus (HPV) and are very common. Anybody can get warts."
Jaliman says warts are very contagious and kids get them from playing with other kids. "They touch other kids' hands that have warts," says Jaliman. "Sometimes the children take baths with their siblings, so all the kids in the family get warts. You can get it from the surface of a public pool. They are very common, and if you don't treat them, they can stay within the skin's surface. If you have it on one finger, it can go to the finger adjacent to it. And sometimes people think that if they have one wart it's going to go away, and they don't treat it. Then they have ten warts and twenty warts and sometimes we see one hundred warts. So it can become a big problem."
Jaliman cautions that warts need to be treated, and over-the-counter remedies can work. But, if the problem persists, a dermatologist should be consulted. She treats patients with liquid nitrogen, which freezes the warts, and sometimes prescribes stronger acids that you can get at a pharmacy to burn away the growths. Other medicines? Immune stimulators (creams that stimulate the body's immune system to destroy the wart virus) and even, in the worst cases, laser treatment.
The treatments don't leave scars; they're straightforward and relatively easy to do, but, says Jaliman, "You have to be persistent and very aggressive. Some people don't do well with the treatments because their immune system isn't that good at fighting the virus. It's always better to treat a virus early. In other words, if you get one wart, it's a lot easier to treat than if you have twenty warts. So I always encourage parents -- if you start to see warts on your kids, come early and get the virus treated."
Dede, clearly, didn't get those early treatments, and with his unique immune system problem, they may not have worked. "I've never seen a case that extreme," Jaliman says of Dede. "If he was treated early and he was treated aggressively, I think he might have had a better outcome. But, you know, it's always so unfair to say because we aren't there, and we didn't treat him."
Jaliman agrees with medical experts who have written about Dede -- it's clear there was something wrong with his immune system.
"When I think back to the early days of AIDS," she says, "the patients I saw before we had medication for AIDS, their warts looked like that. They were warts that just grew totally out of control. And it was so difficult to treat because the body has some defense against the wart virus. When you see no defense and the virus growing totally out of control, it takes over the skin. The skin looks almost totally unrecognizable. That's when you know there is something wrong with the immune system."
In Indonesia, Dede is now under the care of a team of local doctors at Hasan Sadikin Hospital. Dr. Hardisiswo Soedjana, who is known as Dr. Hardi, is the lead doctor in Dede's case.
"When Dede came here, I saw almost all of the body of Dede had warts," says Hardi. "As long as the virus is still in his body, there can be growths."
Gaspari, with his specialty in immune function of the skin, has been in contact with the Indonesian doctors and has visited Indonesia twice to help treat Dede.
"We've learned that Dede has a defect in his immune system that doesn't allow him to control this viral infection," says Gaspari. "One of our approaches will be to help restore his immune system. Secondly, we will be attacking the virus to cause the regression of these tumorous growths on his skin. We are trying to obtain some of the pharmaceutical agents that we need to give this treatment, and to deal with some of the complications that we've noted. We're planning further studies to understand the disease. So everything that he needs will be provided to him here in Indonesia. It would be very disruptive for him to travel to the United States. He's much more comfortable here close to his home and his family."
A team of doctors at Hasan Sadikin Hospital has performed eight surgeries over nine months. While Dede was under anesthesia, doctors had to improvise a bit: they'd never done surgery like this before.
"We estimated that the time of one surgery would be just two hours, but it was prolonged to four hours," says Hardi. Doctors ended up using a small electric saw to cut off the longest wart growths -- dead skin tissue hardened by the years. In just one surgery, they filled surgical pans with pounds of what had looked like Dede's "roots" from his hands and feet.
"The stuff that you see in the bowl that the doctors cut off from Dede, that's actually the wart virus," Jaliman said when we showed her a still photo taken from the hospital videotape re-cording of the operation. "That is a pile of contagious viral skin. I think it's such a tragic thing for somebody to have to live with something like this," she adds.
"Imagine when people look at him and they see that, they have no idea what it is. It's terrible for him because it is, in fact, contagious. So imagine what his life must be like. People don't want to go near him."
Doctors are hopeful that Dede's quality of life can improve, most of all that he will be able to use his hands again. The medical team wants to use skin grafts to replace areas of skin that have been severely damaged by the wart growths. They'll be "harvesting" some undamaged skin from near his stomach. However, Gaspari cautions, there is a limit to what can be done.
"The most important part [of the surgeries] is to restore the function of his hands and feet," Hardi says. "He was given a tissue expander to grow more skin on his abdomen. I have explained to him and his family that it's unlikely that he's ever going to be completely cured of his condition. He has an internal health problem that is allowing this to happen, and he's going to be living with that health problem for the remainder of his life." Hardi adds that it will be a challenge to keep Dede in an improved state.
A Gentle Man
If all this is giving you the creeps, we can't offer much solace. Dr. Jaliman says the HPV virus is everywhere -- there's a reason they call it the "common" wart.
"If you have a micro-abrasion in your skin, which we all have, if you have a paper cut or you have anything, and there is a virus, it's going to go into your skin, and you're going to get it," Jaliman says. "Anybody can get a virus and that's why it spreads so easily, and that's why I treat so many warts in my practice."
Fortunately, Dede's condition does not seem to be hereditary, so his children and grandchildren don't appear to have inherited his illness. His children have loved him throughout, no matter what he's looked like.
At the end of the day, what struck us most was the gentle, accepting man behind the story. Decades of difficulty don't seem to have made him bitter. We interviewed Dede after the first of the series of surgeries -- which took away most of the "bark" and returned his feet and hands to a more human shape. He said his hands feel lighter, he can hold things with his thumb, and we watched as, with glee, he completed a crossword puzzle. He delights in the hope of an ordinary life. "I want to find a job, be able to hang out with friends," he says.
His parents say Dede has always left his fate to Allah. "I have accepted the condition and have asked God to give me strength," Dede says. "My spirit is lifted because of this operation. I'm very happy. I got my spirit back."
From "Medical Mysteries: From the Bizarre to the Deadly. . . The Cases That Have Baffled Doctors," by Ann Reynolds and Kenneth Wapner. Copyright © 2009 ABC News. Published by Hyperion. Available wherever books are sold.