If mainstream media has made one thing clear, it’s that we the people crave the bizarre. And sometimes, the bizarre is beyond what anyone could have imagined. Such is the case with certain rare and crazy diseases — disorders that seem to defy reality. Unfortunately for the many sufferers out there, some diseases, however crazy they may be, are very real — and equally as frightening.
Here are just a few crazy diseases to whet your appetite for the bizarre:
1. Polyglandular Addison’s Disease
Type of Disease: Hormonal disorder
Crazy Because: Can cause instantaneous death from sudden emotional distress
Cure: None, but manageable by medication
In February 2008, media reports swirled around the story of Jennifer Lloyd, a 10-year-old from Prestwich, who is one of only six known sufferers in the U.K. of polyglandular Addison’s disease. Addison’s disease is a hormonal disorder named after Dr. Thomas Addison who first described the disease in 1855. The polyglandular form is much rarer than the ordinary disorder, leaving affected patients literally unable to produce adrenaline in response to stress. Adrenaline, or epinephrine, is the “fight or flight” hormone that prepares the body for action. Without adrenaline, the body’s organs cannot respond to stress and instead go into shock and shut down, leaving those affected critically ill. Patients such as Jennifer require constant attention and steroidal medication just to live out their daily lives.
"Something as simple as walking the dog can be a worry,” Jennifer’s mother told the BBC.
In Jennifer’s case, even watching a movie, playing sports or dancing requires strict supervision in case she becomes overly excited. Despite the mundane outlook for Jennifer and other patients with this crazy disease, most can lead normal lives with the help of medication.
2. Reflex Sympathetic Dystrophy
Type of Disease: Nerve disorder
Crazy Because: Causes searing pain as if on fire
Cure: Complex; disease may spontaneously resolve, but treatment usually only lessens symptoms
Imagine being tormented every waking moment of every day by searing pain in your limbs. Your arms feel like they are on fire, they are swollen, hot to the touch, and you sweat excessively. These are just a few of the symptoms of reflex sympathetic dystrophy (RSD), a poorly understood disorder defined by pain in the limbs that is way out of proportion from what is expected following a particular injury or harmful event, such as surgery or stroke. The disease is believed to be caused by an abnormal chain reaction of the sympathetic nervous system, the body system that regulates blood flow and other aspects of the skin. Experts liken the pain response to that of an engine revving out of control.
While the disease may spontaneously disappear on its own, many patients undergo intensive treatments for years just to lessen the pain. And for some patients, the pain can become so profound that they must undergo the most extreme and expensive of therapies -- being placed under a Ketamine coma -- to essentially reset the pain connections of the body. In 2003, under the guidance of German colleagues of renowned RSD specialist Dr. Robert Schwartzman, 14-year-old Lindsay Wurtenberg of the U.S. underwent Ketamine coma-therapy and successfully recovered from a particularly debilitating case of RSD that developed following a harmless spider bite. “I don’t think there is a worse pain problem,” said Dr. Schwartzman of Lindsay’s condition. He was probably right.
Type of Disease: Metabolic Disorder
Crazy Because: Causes patients to smell like rotting fish
Cure: None; limited treatment options
Trimethylaminuria (TMAU), also known as fish malodor syndrome, is a rare metabolic disorder that prevents affected individuals from properly breaking down trimethylamine (TMA), instead letting it build up in the body. TMA is then released in the breath, sweat, urine, and other body secretions, giving off a strong fishy odor that literally cannot be masked. For people with this crazy disease, frequent showering and the use of deodorants, perfumes and colognes are not enough; the smell remains, sometimes becoming so strong so as to fill entire rooms or even auditoriums. The result can be socially and psychologically devastating: "People think this disease is a laughing matter, but for the people who have it, it is not. This syndrome can be highly destructive to a person's personal and social life and to their work and career," Robert L. Smith, a molecular toxicologist at the Imperial College School of Medicine in London, told the Science News.
Currently, there is no cure for TMAU. Affected patients can only reduce the smell by restricting the diet to foods that are not converted to TMA -- a daunting task considering that everyday foods like eggs, legumes as well as certain meats and fish all contain the amino acid choline, a precursor molecule to TMA.
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4. Morgellons disease
Type of Disease: Skin disorder
Crazy Because: The disease remains disputed; is it real?
Sometimes you read about something so crazy that you just can’t tell if it’s real -- such is the case with Morgellons disease, a disorder that expands the imagination. As it currently stands, the U.S. Center for Disease Control (CDC) claims that “the cause of this condition is unknown, and the medical community has insufficient information to determine whether persons who identify themselves as having this condition have a common cause for their symptoms or share common risk factors.”
And it’s no wonder why experts remain baffled -- the symptoms are strangely horrific. According to the Morgellons Research Foundation, a nonprofit organization, some of the crazy symptoms include skin lesions accompanied by pain or intense itching, fibrous material in and extending out of the lesions, crawling sensations like insects under the skin who are moving, stinging or biting, and joint and muscle pain, among others. The disease is so bizarre that many physicians regard Morgellons disease as delusional parasitosis, but this opinion is neither conclusive nor unanimous.
Those affected with the disease, however, are deathly defiant against doubters. Former Oakland A’s pitcher Billy Koch claims to have the disease; in fact, it forced him to withdraw from baseball, and the former ace offered some choice words for the public in an interview with KTVU: “There's no reasonable explanation for it. I'm not seeing things. l'm watching it happen. We're pretty sane people," Billy insisted of his family. The CDC is currently conducting a large-scale investigation to once and for all define the existence of this bizarre and crazy disease.
5. Harlequin Ichthyosis
Type of Disease: Genetic skin disease
Crazy Because: Causes the skin of newborns to become hardened with diamond-shaped scales
Harlequin-type ichthyosis is the most severe form of ichthyosis, a congenital skin disorder affecting newborns. Like a scene right out of the bizarre, infants with this condition are born with hard, thick skin that forms large diamond-shaped plates or scales that are separated by deep cracks. Almost all areas of the skin can be affected disrupting the protective barrier between the body and environment. Infants have difficulty controlling water loss, regulating body temperature and fighting off infections. Many newborns thus succumb to dehydration or infection shortly after birth. For those who do survive, the outlook is pretty bleak; only a few patients survive into adolescence and very rarely into adulthood.
Back in 2005, the "Real Families" documentary series in the U.K. exposed the lives and hardships of two pairs of sisters afflicted with the condition: Lucy and Hannah Betts, and Dana and Lara Bowen. The girls went through daily routines sometimes hours on end applying moisturizer and removing dead skin. The Bowen’s pediatrician, professor John Harper, summed up the outlook of sufferers of this rare condition saying that they are "just not compatible with living."
What isn’t normal tends to be intriguing. People generally crave anything that breaks the cycle of everyday life, and who could blame them? However, what’s crazy to some might not be crazy to others. Every disease, no matter how crazy, has a victim. And sometimes, just recognizing that these victims exist is a step in the right direction.