Frequently Asked Questions on Sarcoidosis (posted 5/4/00)
What follows are some frequently asked questions that the Safety Office has fielded recently. This information is posted by the MATC Safety Office for staff in an attempt to make the current information regarding this topic easily accessible and in a comprehensive format.
If you have any questions, you are encouraged to contact the Safety Office directly at (608)246-6291 or contact us via email.
What is sarcoidosis?
What causes sarcoidosis?
What is the expected frequency of sarcoidosis?
Where are sarcoidosis cases to be reported?
Where can I go to get more information?
What is MATC doing to follow up on concerns staff have expressed?
What is sarcoidosis?
The American Thoracic Society and World Association of Sarcoidosis and other Granulomatous disease (WASOG) have recently published a consensus statement on sarcoidosis. According to WASOG, the primary impetus for this consensus statement "was to update clinicians and scientists regarding new advances related to sarcoidosis. It is hoped that this document will improve the care of patients with this disorder and trigger new studies to further elucidate the cause and pathogenesis of the disorder. " According to various doctors and researchers I have recently talked with, this is an excellent up-to-date article. It can be found on the WASOG website at:http://www.pinali.unipd.it/sarcoid/Additionally, the National Institutes of Health has published the following introduction to sarcoidosis:"Sarcoidosis is a disease due to inflammation. It can appear in almost any body organ, but most often starts in the lungs or lymph nodes.
No one yet knows what causes sarcoidosis. The disease can appear suddenly and disappear. Or it can develop gradually and go on to produce symptoms that come and go, sometimes for a lifetime.
As sarcoidosis progresses, small lumps, or granulomas, appear in the affected tissues. In the majority of cases, these granulomas clear up, either with or without treatment.
In the few cases where the granulomas do not heal and disappear, the tissues tend to remain inflamed and become scarred (fibrotic).
Sarcoidosis was first identified over 100 years ago by two dermatologists working independently, Dr. Jonathan Hutchinson in England and Dr. Caesar Boeck in Norway. Sarcoidosis was originally called Hutchinson's disease or Boeck's disease. Dr. Boeck went on to fashion today's name for the disease from the Greek words "sark" and "oid," meaning flesh-like. The term describes the skin eruptions that are frequently caused by the illness."
http://www.nhlbi.nih.gov/health/public/lung/other/sarcoidosis/index.htmMany reputable websites discuss sarcoidosis. Some of these sites are included as references in the table below (in the next section).
What causes sarcoidosis?
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The Mount Sinai School of Medicine:
http://www.mssm.edu/medicine/pulmonary/sargen.html
(2/17/00) |
"Sarcoidosis is a very common disease of unknown cause which may involve every part of the body. " It also states that "Sarcoidosis - which has an unknown cause - can be serious in some people, even causing death. Generally, though, the disease is not serious, coming and going and then disappearing." |
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The American Lung Association states:
http://www.alaw.org/fasarc.html
(2/17/00 1:40: PM) |
"What causes sarcoidosis: This is a big part of the mystery. No one knows. The causes put forth at various times have been imaginative, to say the least. For instance, pine pollen, spray deodorants, or broken fluorescent lights bulbs. None has stood the test of time and analysis.
Some physicians believe sarcoidosis results from inhalation of an infectious or allergic substance from the environment. Other believe that the disease is a basic problem in alteration of the cellular immune system. Nobody knows." |
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The National Institute of Health state:
http://www.nhlbi.nih.gov/health/public/lung/other/sarcoidosis/
(February 17, 2000 12:46 PM) |
No one yet knows what causes sarcoidosis. The disease can appear suddenly and disappear. Or it can develop gradually and go on to produce symptoms that come and go, sometimes for a lifetime. |
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The Arthritis Foundations states:
http://www.arthritis.org/answers/diseasecenter/sarcoidosis.asp
(2/17/00 2:02: PM) |
WHAT CAUSES SARCOIDOSIS? The cause of sarcoidosis is unknown. Suspected causes include: a viral or bacterial infection; a defect in the body's immune system; an unidentified toxic substance an unknown environmental cause; an inherited or genetic factor. |
What is the expected frequency of sarcoidosis?
The statistics of 5 in 100,000 to 40 in 100,000 is quoted in a NIH Publication No. 95-3093, reprinted in July 1995. These statistics are in the literature but, according to the National Sarcoidosis Resource Center (NSRC), are approximately 10 years old and must be used with a qualifier that states this greatly underestimates the number of cases.
No one really knows the current statistics and for years the disease has been underestimated. According to NSRC, this is because: 1) there is a high percentage of individuals that are asymptomatic (approximately 70%), 2) sarcoidosis is not a reportable disease to CDC and therefore statistics are not easily available, and 3) physicians have not typically been educated in how to diagnosis the disease and many people are misdiagnosed with a different disease. This is all changing now as physicians become more knowledgeable and able to properly diagnose the disease .Additional contacts I have made also indicate that this is a highly underestimated frequency and that the medical community does not have a good understanding of the actual rate. According to Dr. Robert P. Baughman, M.D., Professor of Medicine, Pulmonary and Critical Care Medicine University of Cincinnati Medical Center who is considered a specialist in the area of sarcoidosis research , "the frequency varies a great deal. In some parts of Sweden over 1% of the population gets sarcoidosis. A study from Detroit suggested the incidence is closer to 1-5 per thousand."
Where are sarcoidosis cases to be reported?
There is currently no one organization that collects data on diagnosed sarcoidosis cases. Sarcoidosis is not a infectious disease and is, therefore, not reportable to the Center for Disease Control (CDC).
Where can I go to get more information?
NIH study on Etiology:
There is much we do not know about the disease. However, there is extensive research being done currently to help answer these questions. One study in particular is funded by the National Institute of Health (NIH) and is termed the ACCESS study (ACCESS stands for A Case Control Etiology Sarcoidosis Study). In this study, 10 centers across the United States have been funded by NIH to study the etiology of sarcoidosis. It is a six year study and is currently in the 5th year. Research reports should be out within the year.
Sarcoidosis Conference:
The NSRC hosted a conference on sarcoidosis in January on the East coast. Lead researchers in the area of sarcoidosis made presentations at the conference. Copies of the videos and cassettes covering 10 hours of conference proceedings are available through the NSRC website at:
http://www.nsrc-global.net/
Medical Literature:Searching medical literature for a few minutes I found over 800 medical articles written within the last two years on sarcoidosis. I copied a few abstracts for your perusal to provide a snapshot of the diversity of the medical literature relative to sarcoidosis.
What is MATC doing to follow up on concerns staff have expressed?
Sarcoidosis is a topic that has been brought to the MATC Safety Office's attention by concerned staff. The specific concerns being 1) does the frequency of sarcoidosis within the MATC population represent a concern and 2) what, if anything, should MATC be doing to ensure a safe and healthful environment.
Due to this expressed concern, I have spent time researching the topic relative to what is currently known about sarcoidosis. There is no obvious answers to the question above at this time. Sarcoidosis has been known for over 100 years and currently the causes of the disease are unknown and the frequencies of the disease are unclear. I have established some key contacts within the medical community, including principle investigators and key researchers for two of the 10 NIH ACCESS Centers. I am currently working with them to assist us in understanding the disease.
One recommendation from Dr. Robert P. Baughman, M.D., was that follow-up be done with the known cases of diagnosed sarcoidosis to investigate this possibility of hypersensitivity pneumonitis. Dr. Baughman indicated that "hypersensitivity pneumonitis (an allergic like reaction) can look many ways like sarcoid, especially with the finding of granulomas in lung biopsies." I have secured services from the National Jewish Research Center to assists us with this recommended follow-up.
If you have any questions or training needs, contact the Environmental Health & Safety Office at (608) 246-6291 or via email
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