Doctors puzzled over bizarre infection/Morgellons disease
Saw this in the local paper today:
http://www.post-gazette.com/pg/08017/849896-114.stm?cmpid=HBEHTML
CDC gives $545,000 to study mysterious skin condition
A mother's battle against son's mystery ailment pays off
When Mary Leitao's 2-year-old son began growing fibers from his skin in 2001, little did she realize the ordeal she faced.
Physicians couldn't explain it. Mrs. Leitao, who was living in Peters, Washington County, at the time, named it Morgellons -- a temporary name, or so she thought, that described a skin condition documented in France in the 1600s.
In 2002, she created the Morgellons Research Foundation, which advocated that the U.S. Centers for Disease Control and Prevention in Atlanta investigate the mysterious ailment, which features strange skin fibers, rashes, sores, fatigue, mental confusion, joint pain and other symptoms.
Mrs. Leitao said she still doesn't know what causes the ailment, but her seven-year effort finally is paying off.
Yesterday, the CDC announced plans to launch a $545,000 study of Morgellons.
Dr. Michele Pearson, the CDC's principal investigator, said the center has received a number of inquiries that prompted the study.
It will focus on patients of Kaiser Permanente Northern California, a health plan that has documented a number of Morgellons cases.
Dr. Pearson said it will take a year to complete the study, which researchers hope will lead to better understanding of Morgellons' cause and possible treatments. Testing will include interviews with patients, medical evaluations, skin biopsies and mental health assessments.
"What is clear is that those who suffer from this condition and their families and physicians have questions, and we want to help them find meaningful answers," said Dr. Pearson, noting that further studies may be necessary.
The foundation, whose Web site is www.morgellons.org, has registered more than 11,000 families. In November, it notified the CDC that 37 percent of those families report multiple members afflicted with the illness.
More than 200 Pennsylvania families are registered with the foundation. Residents of Canada, Europe and Australia also have reported having the ailment.
"I'm very pleased that they are taking action," Mrs. Leitao said. "Of course, I would have liked all of this to have happened much faster."
She said she hopes the CDC can identify not only the cause but the best treatment. Some people, she said, have gotten better on antibiotics. Her son Drew, 9, has improved with treatment, and skin fibers no longer are apparent.
"People are suffering in pretty big ways, especially when they feel they are shut out of medicine and can't have their problem recognized," Mrs. Leitao said.
Although many questions remain unanswered, Dr. Pearson said the time has come to recognize Morgellons as a problem. "We can't characterize it as a syndrome, but people clearly are suffering, and what they are experiencing is real," she said.
Saw this in the local paper today:
http://www.post-gazette.com/pg/08017/849896-114.stm?cmpid=HBEHTML
CDC gives $545,000 to study mysterious skin condition
A mother's battle against son's mystery ailment pays off
When Mary Leitao's 2-year-old son began growing fibers from his skin in 2001, little did she realize the ordeal she faced.
Physicians couldn't explain it. Mrs. Leitao, who was living in Peters, Washington County, at the time, named it Morgellons -- a temporary name, or so she thought, that described a skin condition documented in France in the 1600s.
In 2002, she created the Morgellons Research Foundation, which advocated that the U.S. Centers for Disease Control and Prevention in Atlanta investigate the mysterious ailment, which features strange skin fibers, rashes, sores, fatigue, mental confusion, joint pain and other symptoms.
Mrs. Leitao said she still doesn't know what causes the ailment, but her seven-year effort finally is paying off.
Yesterday, the CDC announced plans to launch a $545,000 study of Morgellons.
Dr. Michele Pearson, the CDC's principal investigator, said the center has received a number of inquiries that prompted the study.
It will focus on patients of Kaiser Permanente Northern California, a health plan that has documented a number of Morgellons cases.
Dr. Pearson said it will take a year to complete the study, which researchers hope will lead to better understanding of Morgellons' cause and possible treatments. Testing will include interviews with patients, medical evaluations, skin biopsies and mental health assessments.
"What is clear is that those who suffer from this condition and their families and physicians have questions, and we want to help them find meaningful answers," said Dr. Pearson, noting that further studies may be necessary.
The foundation, whose Web site is www.morgellons.org, has registered more than 11,000 families. In November, it notified the CDC that 37 percent of those families report multiple members afflicted with the illness.
More than 200 Pennsylvania families are registered with the foundation. Residents of Canada, Europe and Australia also have reported having the ailment.
"I'm very pleased that they are taking action," Mrs. Leitao said. "Of course, I would have liked all of this to have happened much faster."
She said she hopes the CDC can identify not only the cause but the best treatment. Some people, she said, have gotten better on antibiotics. Her son Drew, 9, has improved with treatment, and skin fibers no longer are apparent.
"People are suffering in pretty big ways, especially when they feel they are shut out of medicine and can't have their problem recognized," Mrs. Leitao said.
Although many questions remain unanswered, Dr. Pearson said the time has come to recognize Morgellons as a problem. "We can't characterize it as a syndrome, but people clearly are suffering, and what they are experiencing is real," she said.
