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Sarcoidosis Support-Networking Group
Information and Support from the Hunter Valley, NSW, Australia
to Midcoast ME U.S.A. . . . and Beyond
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Bits and Pieces
This section contains
informational snippets about sarcoidosis. I have selected
the topics based on my own experience with sarcoidosis when first
diagnosed as well as requests from other newly diagnosed "sarcoidians."
I hope you will find this information helpful to you if you, too,
have just been diagnosed with this autoimmune disease. In addition,
I have provided some links to more comprehensive articles about sarcoid
written by individuals who specialize in sarcoidosis knowledge and treatment.
For further information and links, visit The Reference Library.
Topics included in this section are:
- General prognosis after diagnosis of sarcoidosis.
- Proper sarcoidosis treatment requires ongoing vigilance.
- Cause of sarcoidosis may include genetic predisposition to autoimmune disease.
- Sarcoidosis is not a rare disease, but is little known.
- The "invisible" general symptoms of sarcoidosis.
- Pulmonary sarcoidosis, erythema nodosum, and Lofgren's Syndrome.
- The radiologic stages of pulmonary sarcoidosis.
- Neurosarcoidosis may affect 10% of sarcoidosis patients.
- Medical tests and procedures used to diagnose sarcoidosis.
- Corticosteroids and other medications used to treat sarcoidosis.
- **Important Note about corticosteroid use.**
- Uveitis, an eye inflammation, is a common condition for people who have sarcoidosis.
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Support and Caring
Support and caring are such a vital part of the overall treatment plan for sarcoidosis. When individuals are first diagnosed with this chronic, systemic disease, they may feel a wide range of emotions. In addition, they may never have heard of the disease before despite the fact that it is becoming more prevalent in the world population. It is important that these people have resources to which they can turn for information about the disease, and how best to adjust to and cope with it. It is also important for them to have individuals to whom they may turn for support and caring. Such individuals may be their partner, family, friends, or a fellow sarcoidian, who can listen and respond, thus lessening the frequent feeling of being isolated from the rest of the "world."
I am providing this support and caring section of my Website
for those who may at some time during the course of their disease
need a helping hand or ear or eye. It provides an introduction to
this support networking forum
, which promotes communication between sarcoidians on the
Internet (via ICQ List, e-mail and chats), letters via the postal service, telephone calls, and personal contact (one-on-one and group meetings).
The list of tips for people with sarcoidosis provides suggestions for coping and living healthy with the chronic disease. It is a pro-active list that requires the sarcoidian to participate in the management of his/her own medical and emotional care.
There is also information in support of partners and other unpaid carers
who are a vital part of the success formula in caring for someone with a chronic illness. Carers are ordinary
people who may need a helping hand occasionally, too. This section contains a substantial amount of information,
including a page of resources just for family caregivers.
The section, Life Changes and How They Affect People, deals with the emotional impact that a life change such as chronic illness can have on an individual and those around him/her. There is a discussion that includes links to nine articles that have been reprinted on the site and also links to some additional information contained on other sites.
I have compiled a list of
chat rooms for those who wish to connect online
with others who have sarcoidosis and/or fibromyalgia. The listings
will link you directly to a number of chatrooms about lung
disease, sarcoid, and fibro. I will add others as I find them.
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The Reference Library and Glossary
The Reference Library is an information center. It provides information about organizations, books and other publications, and links to sites on the Internet where information can be obtained. Hospitals who have departments specializing in sarcoidosis or are doing research in the disease will be listed as known, and if any specific doctors' names are obtained, I will include them in this section.
I have also compiled a glossary of definitions of some of the terms used in discussions about sarcoidosis that are unfamiliar to many patients. I believe it will help the average person to better understand some of the medical terminology used in much of the sarcoid information they find.
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Fibromyalgia Connection and Information
The Fibromyalgia Connection is a very important section
of this site. I have added it because I feel that understanding fibromyalgia and
a sarcoidian's risk of developing this painful condition could make a great difference in a
person's life. Fibromyalgia is a common affliction for many who suffer from autoimmune diseases,
so it is important to learn about its symptoms in the event that it becomes an issue
for those of us with sarcoid (as it did for me). For those of you who wish to consult
more extensive resources, you will find numerous listings and links on the second
page of this section, Fibromyalgia Resources.
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Features health articles, medical news, doctor-produced video webcasts,
community message boards and chat rooms; professional
healthcare resources, email, newsletters, books and reviews;
and resource directories on diseases, disorders and chronic illness.
This site has greeted
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Compiled by Chris Townsend, Sarcoid Connection
cmtown@excite.com
Last Modified on May 1, 2009