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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.
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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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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.
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ACE level (Angiotensin
Converting Enzyme)
- Biopsies:
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Bronchoscopy
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Lymph Node Biopsy
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Mediastinoscopy
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Nerve Biopsy
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Open Lung Biopsy
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Skin Lesion Biopsy
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Synovial Membrane Biopsy
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Calcium (ionized)
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Calcium (urine)
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CBC (Complete Blood Count)
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Chem-7
or Chem-20
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Chest X-ray
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Gallium (Ga) Lung Scan
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Hypersensitivity Pneumonitis
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PTH (parathormone)
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Quantitative Immunoglobulins
(Nephelometry)
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Serum calcium
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Serum Immunoelectrophoresis
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Serum Phosphorus
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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.
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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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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.
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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 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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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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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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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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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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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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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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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 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.
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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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