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Morgellons Disease Stumps Experts

CDC Launches Investigation of Rare Skin Problem

Case Study of Morgellons

Mary Leitao, a biologist in Pittsburgh, was spreading cream on her 2-year-old son's arm when she noticed something very unusual. "I saw this material, this fibrous material, come out of his skin. ... It was balls of fiber, like they were all bound together. When I applied the cream, they came out of his skin."

He soon began itching -- a lot -- and developed "pretty severe skin lesions," Leitao tells WebMD. "He would wake up with bloody bed sheets and was very, very uncomfortable. It was frightening."

Most frightening, and frustrating, was the dearth of information on this condition. "I'm a scientist. I did literature searches, and nothing could be found." But online she quickly met people with the same condition.

It was Leitao who called the condition "Morgellons" in 2002, naming it after a seemingly similar illness first described centuries ago. She then launched the Morgellons Research Foundation web site. It provides a registration service for people to report their symptoms.

Since 2002, up to 11,059 families have registered on her site, says Leitao. In November 2007, Leitao notified the CDC that 37% of those families had multiple family members with the symptoms.

Difficult Investigation

"It's going to be a difficult investigation," says Pearson. "We're trying to figure out this unexplained condition for which we don't have a blueprint. The symptoms are complex. We'll be looking at the range of symptoms and the extent to which it overlaps with other conditions."

Patients in the study will get comprehensive exams -- a general medical exam, dermatological exam, blood tests, chest X-rays, urine samples, and skin biopsies. "They also will get a mental health exam, so we can screen for common psychiatric disorders -- and for real evidence of cognitive deficits," Pearson says.

"It's clear that this is a complex disorder and is likely due to multiple factors," she says. "Some common conditions may be causing the symptoms -- diabetes, thyroid conditions, autoimmune conditions. These can present with chronic ulcerative lesions, chronic itching. Those are some things we hope look for as part of our evaluation."

As for Leitao's son, "he's much improved, although we're not sure why," she says. "We tried antibiotics, other medications. We're not exactly sure what helped." However, her older children have developed the skin symptoms as well, though not to the extent her youngest son had them.

"They have more fatigue, which is very, very typical for adults who develop this," says Leitao. "The fatigue can be pretty life-altering. Their fatigue has not improved, and it's a big concern to me."


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