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Sarcoidosis Information Links

   

Although there is a wealth of sites about sarcoidosis, or sarcoid, on the Internet today, finding and gathering timely, useful information remains difficult. Our Sarcoidosis Information page sorts through sarcoid related web pages to compile what we consider to be the best sources for accurate information on the Internet. 

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What is Sarcoidosis?

Sarcoidosis is also known as Sarcoid or Boeck's disease, is a multi-system auto-immune disease. It is a systemic granulomatous disease especially involving the lungs with resulting fibrosis but can also effect skin, liver, spleen, eyes, bones, brain, parotid glands and other soft tissue organs.

  • Sarcoidosis is not contagious

  • Sarcoidosis onset may appear without any symptoms

  • Sarcoidosis can cause lifelong ailments

At this time there is no cause or cure for sarcoidosis.

 

The following sites explain more about what sarcoid is and is not. Some are for the newly diagnosed and some are for people who want to find out more about this disease. This is a great place to delve into possible causes and treatments of sarcoid.

  • The Image of Sarcoidosis
    The highlights of this site come from the detailed case studies shown complete with chest x-rays (CXR) pictures of patients with stage I, II, III, mediastinal mass and other more complicated cases. This is a great place to view step by step pictures of the effects of sarcoidosis and how they compare to the other stages of the disease. Follow site links to view other areas of the body that are often involved by sarcoid granulomas including lungs, bone marrow, lymph nodes, the liver, and the spleen.
     

  • Sarcoidosis May Be Caused By Unknown Environmental Agent:
    This article, written April 24, 1997 by a physician at the National Jewish Medical and Research Center in Colorado, describes what the medical community has learned about the disease during the past 10 years. It sites an "unknown environmental agent" as the possible source of sarcoidosis and probably having more than one cause.
     

  • Atlas of Granulomatous Diseases
    Developed by an M.D. this site presents gross and microscopic images of granulomatous diseases with a marked emphasis on sarcoidosis. Although the content of this site is targeted primarily for pathologists and other physicians, some of the content, especially the gross photographs of lungs and other sites affected by sarcoidosis, will also be of interest to patients and others who visit this website.
     

  • AllRefer.com
    AllRefer.com is a hub of good educational information containing an outstanding database of articles and reference materials. Students, teachers, and researchers can depend on it for information that is authoritative and up-to-date. The site has extensive information from trusted sources on over 150,000 articles from a brief encyclopedia, gazetteer, and health encyclopedia. Type Sarcoid or Sarcoidosis in the search box on the homepage and reap the wealth of information provided.
     

  • Diagnosis and Management of Cardiac Sarcoidosis
    A recent review article on the topic of cardiac sarcoidosis co-authored by Rodney H Falk, MD, Director, Brigham and Women's Hospital/HVMA Cardiac Amyloidosis Program. Associate Clinical Professor of Medicine, Harvard Medical School.
     

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Diagnostic Testing

The web links listed below are used in-part by the medical profession to diagnose sarcoidosis. While they are not the only tests used, they do represent the more common tests performed. There is not now any definitive test for sarcoidosis. It is diagnosed by the "process of elimination" of other diseases. Currently, the lung biopsy is considered the best test available to "prove" pulmonary sarcoidosis

Visit these websites to find out what you should know before the test, how to prepare for the test, the purpose, risks and precautions involved. There is also information about what you can expect to hear, see and feel during the test, a step-by-step description of the entire procedure, and much more. Some even give the estimated cost and time involved! The knowledge you gain by visiting these sites can make you feel "comfortable" by understanding the process. 

  • ACE level (Angiotensin Converting Enzyme)
  • Biopsies:
    • Bronchoscopy
    • Lymph Node Biopsy
    • Mediastinoscopy
    • Nerve Biopsy
    • Open Lung Biopsy
    • Skin Lesion Biopsy
    • Synovial Membrane Biopsy
  • Calcium (ionized)
  • Calcium (urine)
  • CBC (Complete Blood Count)
  • Chem-7 or Chem-20
  • Chest X-ray
  • Gallium (Ga) Lung Scan
  • Hypersensitivity Pneumonitis
  • PTH (parathormone)
  • Quantitative Immunoglobulins (Nephelometry)
  • Serum calcium
  • Serum Immunoelectrophoresis
  • Serum Phosphorus
  • The Image of Sarcoidosis - Pulmonary
    A great website designed by a physician with information on diagnosis, pathology, clinical information, self assessment and other references. Also included are some very nice images and its effects.

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Medication Information

This section deals with medication sites. It gives very extensive information on the most common drugs used to treat sarcoid. Also a great place to find out about newly released drugs.

  • Corticosteroids and Adrenal Glands
    Corticosteroids can have devastating effects on the adrenal glands. This site explains how the glands work and what side effects can be expected with corticosteroid use. FYI - you'll need to scroll down to the bottom of the page to see the information on corticosteroids. This great bit of information was hidden inside a page on herbal medicine and the adrenal glands, which is also very interesting!
     

  • RxList - The Internet Drug Index
    Created by a hospital Pharmacist RxList is a database of medications currently on the US market or close to approval. There are more than 4000 US products listed here. You will also find a wealth of information from the Internet resources which have created links to this site. You can perform keyword searches simultaneously for potential drug interactions, side effects, indications, etc. RxList ID also allows you to identify unknown tablets and capsules by searching for their ID imprint codes.
     

  • Drug InfoNet
    Pharmaceutical product information and drug interactions are the main focus of this site. They also describe individual diseases and include timely articles, news and support groups and links. You will find a complete source for medical research where doctors and pharmacists answer your questions regarding health care issues.
     

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Hospital Resources

The following medical centers have proven themselves to be excellent diagnostic facilities. They are technologically superior in studies of lung disorders and auto immune diseases including sarcoidosis. Patients who seek treatment at these facilities include many with severe cases as well as those whose condition has been misdiagnosed or undiagnosed. These are meant to be "gateways" to the hospital resources.

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Organizations

These organizations deal specifically with sarcoid and it's secondary diseases. There are also some government sites to help you navigate your way around the health care system.

  • National Sarcoidosis Resource Center (NSRC)
    Dedicated solely to sarcoidosis the NSRC web site offers help and information for anyone who seeks it. This international organization has a registry of over 15,000 patients. Founder, Sandra Conroy, authored the sarcoidosis Resource Guide and Directory. The site has some good links to other sites pertaining to sarcoid. Great place to start and return to when searching for information about this disease. Have patience it can take awhile to load.
     

  • NCQA's Guide for Consumers
    The National Committee for Quality Assurance (NCQA) is an independent, not-for-profit organization dedicated to assessing and reporting on the quality of managed care plans, including health maintenance organizations (HMOs). This site focuses on "Choosing Quality: Finding the Health Plan That's Right For You" Very informative.
     

  • National Lung Transplant Patients Association
    This web page was listed because many sarcoid patients' disease start or include the lungs. The goal of this site is to improve the quality of life for lung transplant recipients, lung surgery candidates, people with related pulmonary concerns and their families.
     

  • World Association for Sarcoidosis and Other Granulomatous (WASOG)
    The WASOG (World Association for Sarcoidosis and Other Granulomatous Disorders), was founded in 1987 in Milan, Italy, during the World Congress for Sarcoidosis. The topics WASOG is focussing on are interstitial lung diseases (ild). Many ild (e.g. sarcoidosis) are part of a larger systemic problem, where the lung may be a minor target; others (e.g. idiopathic pulmonary fibrosis) are nearly exclusively a lung problem from the beginning. Thus, the future lies as a branch midway between pneumology and internal medicine, but it is clear that currently the WASOG has its own experts, journal, society and patients.

     

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University Resources

Some of the leading university teaching hospitals are included in the sites below. These facilities specialize in and receive research grants for studies of many diseases including sarcoidosis.

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Chronic Pain

Acute or chronic sarcoidosis can cause mild to intolerable pain to a patient struggling with this disease. In addition to the more common joint and muscle pain, complications due to the location and/or size of a granulomatic mass can cause changes in the body during the onset and subsequent progression of the disease. The effects on the body can be long lasting, even permanent, after the mass has subsided. The sites listed below are only the beginning of a growing number of webpages to address this very real problem among sarcoidosis patients.

  • The American Chronic Pain Association
    The ACPA offers support and information for people with chronic pain. It is a wealth of information about chronic pain including resources for finding doctors and organizations and a huge list of links to chronic pain sites and resources. Their stated goals are: to facilitate peer support and education for individuals with chronic pain and their families so that these individuals may live more fully in spite of their pain and to raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.
     
  • The American Pain Society
    The American Pain Society is a multidisciplinary educational and scientific organization dedicated to serving people in pain. The American Pain Society is a multidisciplinary organization of basic and clinical scientists, practicing clinicians, policy analysts, and others. The mission of the American Pain Society is to advance pain-related research, education, treatment and professional practice.
     

  • The Worldwide Congress on Pain
    This high content, innovative site could be the single Internet source for pain and pain management world wide. With an impressive span of pain topics and vast searchable library, consumer and pain forums, links to other pain sites and "Ask The Pain Doctor" where specially trained pain physicians respond to your requests, the World Wide Congress on Pain appeals to both health care providers and consumers. There is also an extensive directory for finding a pain specialist or pain clinic in your area! The Dannemiller Foundation has compiled a list of hundreds of pain specialists and pain clinics from every state. Simply click on the state where you want to find a pain specialist or pain clinic. Each specialist and/or clinic is listed in zip code order with the complete mailing address.
     

  • Pain Management Center
    This is a very well rounded site about pain management. Created by an M.D. and Director at the Pain Management Center in Illinois, it is designed for the pain professional as well as chronic pain sufferers. The links on the site include advanced treatments for pain, pain associations and organizations, and a list of conditions associated with pain.
     

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Alternative Healing

While there are some of the more common types of alternative treatment like acupuncture here, you may also find sites on not-so-common types such as laughter, homeopathy, physiartry, physical medicine and rehabilitation. You can even post a message to Dr. Weil, the world renown expert in alternative medicine!

  • Acupuncture.com
    This site is a great online resource for Traditional Chinese Medicine (TCM) From here you can gain a lot of knowledge about the art of TCM, a primer on the various modalities an Acupuncturist employs, Acupuncture FAQ and a list of Acupuncturists around the world so you can locate licensed TCM practitioners in your area. You can also view information about Acupuncture research and resources for practitioners and students including journal articles, schools, Acupuncture laws books, needles, software and more. There is even a section of patient testimonials about Acupuncture. It's set up in a kind of "newsletter" style format where you can obtain the latest breaking information about Acupuncture.
     

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Comic Relief!

It's rough being sick all the time. Come back here every so often and check out one of these sites. Everyone deserves a good chuckle from time to time!

  • Comics.com
    This site features daily comic strips From this web site launch-pad you can take a break and check out your favorite cartoon strip characters online. Then, browse a huge collection of award-winning, nationally-syndicated cartoons. There are a lot of strips here to choose from, your favorites included!
     

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Helpful Links

This topic can really cover a lot of stuff on other pages. We have included sites that we feel are very important to anyone dealing with sarcoid. There are newsletters, a Doctor and support group finder, chat sites, bulletin boards and sites that relate to sarcoid and related illnesses.

  • Sarcoidosis Dr Database and Support Group Finder
    Find sarcoidosis Drs. and sarcoidosis support groups in your local area! Looking for a Physician in your state specializing in sarcoid? Trying to find a sarcoidosis support group in your area? This new directory may be the answer.
     

  • NSRC Sarcoidosis Community Newsletter
    The online newsletter about sarcoidosis! Here you can see the most current information, issues and articles about sarcoidosis. Information about new medications, new treatments, new theories on the cause and cure of sarcoid. There are also schedules for sarcoidosis chats on AOL and computer tips to help you better use the Internet to research sarcoidosis.
     

  • The Cheshire Medical Center
    This site is a really good resource, in particular these three areas. When you get to the site, scroll down about one third of the way to the three lung areas. The first is the "Chronic Lung Disease Resource" which highlights the best information on Chronic Lung Diseases using both original and off-site links. The second area is the "Chronic Lung Disease Forum" a bulletin board type message area. Once there, you can enter questions or view and comment on other entries. Tip: If you type in the word sarcoidosis in the search prompt you can screen out all entries except those pertaining to sarcoidosis (and there are a lot!). The last area is the "Chronic Lung Disease Chat". Here you can share ideas and experiences with others afflicted with sarcoidosis in a real time chat.
     

  • HealthGate Home Page
    Describing itself as "Your online source for health, wellness, and biomedical information" this area has it all. Their Health Information Center is an interactive health information service and community support group for people with chronic or acute health conditions. The other two areas contain the world's largest biomedical database. There are other areas for intensive research here, but require payment.
     

  • Edmund's Home Page
    Boasting "links to all of the medical professions on the net" this is a great resource for the research patient. The site lists name, addresses, phone numbers and specialties of many facilities in the U.S. and abroad. It also lists medical centers, diseases, surgeries, and pharmacies.
     

  • Patient to Patient Message Forum
    This page is not currently being updated. We have switched over to Facebook for a better system fot people to interact.

  • This is where we share information and learn from each other. You can ask questions, leave comments, tell about your experiences or just browse and see what others have written!   With thousands of people reading and leaving messages it's a great place to network with others about similar symptoms and situations.
     

 
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