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.
"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."