Essay — From the September 2013 issue
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Essay — From the September 2013 issue
For Paul, it started with a fishing trip. For Lenny, it was an addict whose knuckles were covered in sores. Dawn found pimples clustered around her swimming goggles. Kendra noticed ingrown hairs. Patricia was attacked by sand flies on a Gulf Coast beach. Sometimes the sickness starts as blisters, or lesions, or itching, or simply a terrible fog settling over the mind, over the world.
For me, Morgellons disease started as a novelty: people said they had a strange ailment, and no one — or hardly anyone — believed them. But there were a lot of them, reportedly 12,000, and their numbers were growing. Their illness manifested in many ways, including fatigue, pain, and formication (a sensation of insects crawling over the skin). But the defining symptom was always the same: fibers emerging from their bodies. Not just fibers but fuzz, specks, and crystals. They didn’t know what this stuff was, or where it came from, or why it was there, but they knew — and this was what mattered, the important word — that it was real.
The diagnosis originated with a woman named Mary Leitao. In 2001, she took her toddler son to the doctor because he had sores on his lip that wouldn’t go away. He was complaining of bugs under his skin. The first doctor didn’t know what to tell her, nor did the second, nor the third. Eventually, they started telling her something she didn’t want to hear: that she might be suffering from Münchausen syndrome by proxy, which causes a parent or caregiver to fabricate (and sometimes induce) illness in a dependent. Leitao came up with her own diagnosis, and Morgellons was born.
She pulled the name from a treatise written by the seventeenth-century English physician and polymath Sir Thomas Browne, who described
that Endemial Distemper of little Children in Languedock, called the Morgellons, wherein they critically break out with harsh hairs on their Backs, which takes off the unquiet Symptoms of the Disease, and delivers them from Coughs and Convulsions.
Browne’s “harsh hairs” were the early ancestors of today’s fibers. Photos online show them in red, white, and blue — like the flag — and also black and translucent. These fibers are the kind of thing you describe in relation to other kinds of things: jellyfish or wires, animal fur or taffy candy or a fuzzball off your grandma’s sweater. Some are called goldenheads, because they have a golden-colored bulb. Others simply look sinister, technological, tangled.
Patients started bringing these threads and flecks and fuzz to their doctors, storing them in Tupperware or matchboxes, and dermatologists actually developed a term for this phenomenon. They called it “the matchbox sign,” an indication that patients had become so determined to prove their disease that they might be willing to produce fake evidence.
By the mid-2000s, Morgellons had become a controversy in earnest. Self-identified patients started calling themselves Morgies and rallying against doctors who diagnosed them with something called delusions of parasitosis (DOP). Major newspapers ran features posing some version of a question raised by the New York Times in 2006: “Is It Disease or Delusion?” The Centers for Disease Control and Prevention (CDC) launched a full-scale investigation soon afterward.
In the meantime, an advocacy organization called the Charles E. Holman Foundation started putting together an annual Morgellons conference in Austin, Texas, for patients, researchers, and health-care providers — basically, anyone who gave a damn. The foundation was named for a man who devoted the last years of his life to investigating the causes of his wife’s disease. His widow runs the conference. She’s still sick. The conference offers Morgies refuge from a world that generally refuses to accept their account of why they suffer. As one presenter wrote to me:
It is bad enough that people are suffering so terribly. But to be the topic of seemingly the biggest joke in the world is way too much for sick people to bear. It is amazing to me that more people with this dreadful illness do not commit suicide . . .
The CDC finally released its study, “Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy,” in January 2012. Its authors, in association with the so-called Unexplained Dermopathy Task Force, had investigated 115 patients, using skin samples, blood tests, and neurocognitive exams. Their report offered little comfort to Morgellons patients looking for affirmation:
We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition . . . or wider recognition of an existing condition such as delusional infestation.
The authors suggested, with some delicacy, that patients might be treated for a number of “co-existing conditions,” such as drug abuse and psychosomatic disorders.
The bottom line? Probably nothing there.
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