Scleroderma Study Results Comes As Bitter Disappointment PDF Print E-mail
Monday, 25 January 2010 12:39
taken from http://www.flickr.com/photos/29498542@N05/3183183488/ via creative commonsElizabeth Lombard has Scleroderma.

The disease, which has no cure, has long confounded South Boston, where a cluster of longtime residents from the City Point section - most of them middle-aged women - were falling ill with it. The residents, who lived near a power plant and hazardous waste sites, believed they were victims of their environment.

Their case gained national media attention and sparked an 11-year investigation by the Massachusetts Department of Public Health. In their findings, released earlier this month, state researchers acknowledged “higher than expected cases’’ of Scleroderma in South Boston, a neighborhood of roughly 30,000 people.

But it determined that genetics, not the environment, played a significant role.

“It’s not necessarily that the community they were living in was producing this disease,’’ said Robert Simms, the chief of rheumatology at Boston Medical Center and a researcher in the study. “When you look at the data, it does not support that.’’

Researchers also said low participation in the $1.75 million study may have limited their ability to find an environmental link.

Without a large enough sample, Simms said, it was difficult for scientists to gather reliable estimates on Scleroderma’s link to the residents’ proximity to toxic wastes and other pollutants.

“Those are the things the South Boston study tried to do and came up short,’’ said Simms, who added that the study now opens the door for much larger, national research.

The study found that people with a family history of specific autoimmune-rheumatic diseases, such as rheumatoid arthritis, Raynaud’s disease, lupus, and thyroid disease, were more likely to develop Scleroderma.

For the women afflicted with the disfiguring disease, the findings have come as a bitter disappointment.

“I thought that if we had an answer then we could fix it,’’ said Lombard, whose eyebrows have fallen out and whose face is tight and covered with red blotches. “It would help us make sense of why so many of my neighbors have this horrible disease.’’

In the study, researchers collected information about participants’ residential, occupational, and family medical histories. They checked for possible exposures to pollution, including hazardous waste sites and a Coastal Oil refinery.

Researchers tried to recruit large numbers of people for the study, but ended up with 41 people who have the disease and 219 randomly selected individuals who did not have it.

Such a small sample, though it suggested no link to the environment, was not large enough to draw hard conclusions, Simms said.

“The trouble is that science isn’t perfect,’’ said Simms. “It can’t always give the emotional validation that they are seeking.’’

For a link to the full story, click here.
 
More articles :

» A Call For Better Monitoring and Treatment Of Scleroderma Patients

The New Zealand Scleroderma Group is calling for the introduction of a monitoring and treatment programme for New Zealanders with scleroderma to mark World Scleroderma Day on June 29.Scleroderma is an autoimmune connective tissue disease that can...

» What are the Early Symptoms of Scleroderma?

Scleroderma is a term used to describe a group of rare, chronic diseases characterized by unusual tightening and hardening of the connective tissues and skin. There are two major types of : localized, which only affects the skin; and systemic, which...

» Glucosamine, Chondroitin and MSM as Alternative Therapies for Scleroderma

In an article titled, "Glucosamine, Chondroitin and MSM as Alternative Therapies for Scleroderma", Dr. Robert B. Buckingham, M.D., discussed three alternative medicines for treating the pain and the other features associated with . Here, we sought...

» Prevention Of Vascular Damage In Scleroderma With Angiotensin-converting Enzyme (ACE) Inhibition

Great strides have been made in identifying and managing the organ-based complications of  systemic sclerosis (SSc). There is no room for the nihilism towards treating this disease that used to be so prevalent. However, there is still...

» Teen To Graduate, Despite Fatal Disease

A rare and life threatening medical disorder has kept a Portsmouth teen out of school and unable to walk for months, but Wednesday night he will walk the stage at his graduation. Wednesday night, families will be filing into the N-Telos pavilion in...

» Small Intestinal Bacterial Overgrowth A Problem For Scleroderma Patients

More than a third of patients with systemic sclerosis and intestinal symptoms have an increase in gastrointestinal tract bacteria, an alteration in the type of gut microbes present, or both, based on data from a French study presented at the annual...