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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 Internet Resources site sorts through sarcoid related web pages
to compile what we consider to be the best sources for accurate
information.
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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.
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Sarcoidosis is not contagious
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Sarcoidosis onset may appear without any
symptoms
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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.
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Sarcoidosis "Fact" Sheet
Published by the Arthritis Foundation this site explains sarcoid in
easy-to-understand terms.
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Sarcoidosis for the Patient
Written by an M.D. this web site offers a very in depth look at sarcoid.
It has a Q & A section and is pretty thorough in the explanation of
sarcoid. Great for the newly diagnosed.
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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.
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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.
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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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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.
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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.
Many of these links come from
the ThriveOnline
Medical website. They have a ton of information on sarcoidosis and
related diseases including symptoms, treatment prevention and images of
sarcoid.
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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.
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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!
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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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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.
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Sarcoidosis Center
Information about sarcoidosis for patients and healthcare providers. Links
to other pages about sarcoidosis and upcoming events of the Sarcoidosis
Center and other organizations around the world.
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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.
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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.
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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.
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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.
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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.
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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.
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Pain Internet
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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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!
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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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Dr. Weil: Ask a Question
Dr. Weil, the world renown expert in alternative medicine answers health
questions at this site. It's easy! Type in a subject, question and email
address (name is optional) and submit! You can also delve into the
archives of previously answered questions. This is a truly interesting
and informative site.
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Jest -
"Laughter as Therapy"
This site is an excerpt from a book which delves into the thinking that
laughter can be a powerful therapy for both the patient and the care
giver. It examines the beneficial effect of humor and laughter on the
body, mind, and spirit; for the patient during recovery from illness.
The site also provides a great laughter as therapy resources and
references guide.
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Alternative Medicine Homepage
Homeopathy is a system that attempts to stimulate the body to heal itself.
It looks at individuals and not at diseases. This site is very
informative with plenty of links that allow you to explore the most
recent developments concerning this unique medical system. This site's
exhaustive list will direct you to practically every alternative medical
site on the Internet. Whether your interest is in magnetic therapy,
herbs, massage and many, many others you may have never have thought of,
you can probably find it here.
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Cumulative Trauma Disorders: Treatment
This site was included for its summary of the more common modalities that
are used for pain and swelling, and a description of what each is
thought to contribute to the treatment, and some guidelines about their
use. A bright, easy to read, humorous approach to very real problems.
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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!
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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.
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AllHealthLinks.com
All Health Links is a free health information and resource site. There is
a wealth of information about sarcoidosis websites as well as links to
other health related websites. It is a great resource for finding health
related websites.
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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.
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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.
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The Cheshire Medical Center
This site 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.
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Doctor's Guide To The Internet:
A very in depth site which includes the latest medical news and alerts
from conferences, literature, newswires and the Internet. There is also
a new drugs and indications area so you can see recently approved drugs
in your country and around the world. This site is rich with new information. Links include pages that have
been updated in the last 7 days, sites that have come online in the last
30 days and sites that will be coming soon. It is a must-see
for any patient wanting to take an active role in their health care!
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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.
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A Guide to Medical Information and Support
This site provides basic technical directions for using the Internet to
access medical information and support groups. They give lots of tips
for researching on the world wide web.
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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.
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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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