Sarcoidosis Less of a Mystery Disease; Updated Info Online Now

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The National Institutes of Health has published new information about sarcoidosis.

The National Health Institutes of Health (NIH) has published online the latest information about the once-mysterious disease called sarcoidosis, which caused the death of National Football League star Reggie White and is responsible for an increasing number of American deaths.

“Many physicians have found it difficult to keep up with the fast-changing information about this disease, which is the reason we have been working with NIH to update their general information about sarcoidosis,” said Belinda Fenter, a director of the non-profit Autoimmunity Research Foundation.

The most significant change is that sarcoidosis is now recognized as a systemic disease affecting organs such as the skin, eyes, liver, heart, spleen, lymph system, brain, kidneys and bones and joints - not just a lung disease. Reggie White, for instance, died of previously unnoticed sarcoidosis in his heart.

Additionally, prednisone, which was once considered something sarcoidosis patients might need for a lifetime, now is recognized as causing avascular necrosis (bone death), osteoporosis, diabetes, high blood pressure, depression, cataracts, glaucoma, adrenal insufficiency and weight gain. Methotrexate, another drug commonly used for sarcoidosis, is now recognized as causing liver damage in as many as 23 percent of patients.

The NIH publication notes that small studies have shown that antibiotics may be effective in treating sarcoidosis. Expanding on an earlier French study, the Autoimmunity Research Foundation conducted phase two studies between 2002 and 2005, using antibiotics to treat neurosarcoidosis, cardiac sarcoidosis and pulmonary sarcoidosis. The foundation recently applied to the Federal Drug Administration for designation of antibacterials to be used in phase three trials (see the press release dated October 4, 2005, linked at the end of this story).

“The cause of sarcoidosis has always been suspected to possibly be infection, and there have been numerous researchers who have reported finding cell wall deficient bacteria -- slow-growing bacteria difficult to culture and identify – within sarcoidosis tissue,” said Dr. Trevor Marshall, Ph.D., director of the foundation.

“Recently, there have been numerous published reports of sarcoidosis transmitted via organ transplants, including stem cell transplants,” said Dr. Marshall. “Once we realized how bacteria caused sarcoid inflammation, everything started to fall into place,” said Dr. Marshall. “There is more to learn, and more to discuss. We are planning future conferences to explore the exciting new discoveries in the field of sarcoidosis,” he added.

DVDs of the March 2005 conference, “Recovering From Chronic Disease,” are available from Autoimmunity Research.

The NIH information about sarcoidosis is published on the National Heart, Lung and Blood website under “Diseases and Conditions” at URL

The Autoimmunity Research Foundation has published a brochure of information gathered from the National Institutes of Health ACCESS study (1995-2001) of sarcoidosis. The online version of the brochure is available at .

The Autoimmunity Research Foundation is a non-profit organization. The press release detailing the foundation’s FDA application is at URL


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Belinda Fenter
Autoimmunity Research Foundation
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