Sarcoidosis Information Links
 

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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.
     

  • 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.
     

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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.

  • Drug Dangers
    Drug Dangers was developed to educate the public and lend a hand to people who have been affected by defective drugs and medical devices. Our goal at Drug Dangers is to keep the public educated and informed of all defective medical devices and dangerous medications that are currently available on the market today.
     

  • 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.
     

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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.

  • 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.
     
  • 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.
     

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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 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.
     

  • 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.
     

  • T.E.N.S Unit
    T.E.N.S. is the abbreviation for Tanscutaneous (through the skin) Electrical Nerve Stimulation - a medical method of reducing or eliminating pain without drugs. A small electric current is passed through pads attached to the surface of the skin. It is thought that this current either blocks the pain receptors or that the pain receptors are "occupied" by the small current and cannot carry pain at the same time. A more in-depth explanation can be seen here. This site also explains a lot about how to obtain and use a T.E.N.S. unit to control 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.
     

  • How to Qualify for Disability Benefits with Sarcoidosis Article
    This is an article about what someone with Sarcoidosis would need to do to get Social Security disability benefits. It was produced by the Outreach Team of the Disability Benefits Help website which can provide you with the name of an independent lawyer or advocate who will contact you to do an evaluation.
     
  • 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.
     

  • Patient to Patient Message Forum
    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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