Sarcoid Connection

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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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WELCOME MESSAGE

My name is Chris, and I've been diagnosed with sarcoidosis, as well as a secondary condition called fibromyalgia.

In order to promote awareness and greater understanding of sarcoidosis (and fibromyalgia) with the general public and the medical community, I decided to organize a sarcoidosis support-networking group and call it the SARCOID CONNECTION. The origin and evolution of this Web site are explained on my Sarcoidosis Support Group - Intoduction and Origins page. The initial goal was for the group to communicate via various forums such as the Internet, postal service, telephone service and support group meetings so that people throughout the world could participate in any of the forums available to them. Originally the site provided only information about sarcoidosis, but it has grown to include sections about the sometimes companion condition of fibromyalgia and an oftentimes neglected segment of the sarcoid family, i.e. the unpaid, overworked family caregiver (spouse, adult child, parent). Although I have not had any requests to organize a live support group in this area, you are welcome to contact me via the E-mail link at the top of this page or by telephone @ (207) 882-7099. My ability to respond will depend upon my own health status at the time.



Important News and Notes:

October 10, 2012 Ė Wow! Itís so good to be back. . . once again. Those of you who have visited here before may have noticed that we were among the missing for more than a month. Unfortunately, there were some issues with our previous hosting company that resulted in our decision to go with a new company that better suits our present needs and a new domain that better suits our present image. In the years since its inception 14 years ago the Website grew to have substantial information about fibromyalgia and family caretakers as well as the main section about sarcoidosis. This is the very same site as it has been for a number of years, but you will now find us at a shiny new address: www.sarcoidconnectionplus.com, an address where you will find sarcoidosis information. . . and so much more, i.e. fibro and carer info, too. I no longer have any connection to my previous domain, sarcoidconnection.com, so anything you may see there is not part of my site, nor have I given permission for any of my site to be re-produced there.

Despite the fact that it is the same Website, there will still be a certain amount of work getting it all back together, so be patient. At first there will just be a main page with links that donít work. Then like magic, the pages will gradually all re-appear with new working links. Once they are all back, I am in high hopes that I will feel well enough to add some totally new information. So keep checking back. I will be working diligently to get the information you need back on this site. And hereís a hint about some new information that I recently found. Do you know what group of more than 200 people has had a greater than 10% incidence of sarcoidosis diagnoses in little more than 10 years? If you are curious about the answer, you will need to check back here to find out who they are and what is being done about it. I think you will be very surprised in one way, but maybe not so much when you think about it.

So hey, Everyone. . . have a great day and keep on smiling, itís great to be back!


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What is Sarcoidosis?

Sarcoidosis (SAR-coy-DOH'-sis) is a chronic, multi-system, granulomatous, autoimmune disease of unknown origin and with no known cure. That said, I will explain.

Chronic is defined as persisting over a long period of time, but that does not mean that the person will exhibit symptoms all the time. As many as half of all individuals who are diagnosed with sarcoidosis are asymptomatic (no symptoms) and are diagnosed "accidentally" when tests are performed for other purposes. Up to eighty percent of people with sarcoidosis will require not treatment and will improve spontaneously.

Approximately one-fifth of individuals who contract sarcoidosis will require treatment for their symptoms and may have one or more recurrences in their lifetimes. The most common symptoms initially exhibited by individuals who have contracted sarcoidosis include fatigue, joint aches, shortness of breath, cough (usually dry), and low-grade fever. Approximately one-half of those who have the disease will have at least a mild degree of permanent organ dysfunction. Although sarcoidosis is usually not life threatening, it will prove fatal for one person in twenty who have it. At the present time, there is no known cure for sarcoidosis.

Multi-system means that not only can the disease affect more than one body organ, it can also affect more than one body system. Sarcoidosis most commonly affects the lungs; up to ninety percent of sarcoidians have lung involvement. However, other sites of the body that may be affected as well include the lymph glands, salivary glands, skin, bones/joints/muscles, and eyes. To a lesser degree the liver, kidneys, spleen, heart, and brain/nervous system can also be involved. If the heart and/or central nervous system become involved in the disease process, the resulting medical problems can be very serious. Male and female sexual organs can be affected, but such an occurrence is quite rare.

Granulomatous refers to the small inflammatory nodules or granulomas, which form in the affected tissue. The term granuloma comes from a Latin word meaning little grain or granule. Granulomas are groups of immune cells, which are normally part of the body's defense system. These granulomas may be present within the body in organs such as the lungs or eyes. Or they may be present outside the body on the skin where they may present as lumps, lesions, and rashes.

Autoimmune diseases are characterized by a specific immune response against components of the body's own tissues. In other words, the body thinks that certain of its own substances are actually foreign matter, and it reacts to eliminate these "invaders." Individuals need to be vigilant in the use of medications or natural medicines that strengthen the body's immune system. Such remedies may cause a reaction by the autoimmune system, too, and can further aggravate the person's symptoms.


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Who Do I Want to Reach With This Website?

1) I am looking for people like me who have been diagnosed with sarcoidosis and/or fibromyalgia, so I can provide them with information about these diseases and how to cope every day with having them. I will provide information at a layman's level as well as provide sources for, and links to, more comprehensive information researched and compiled by experts. I have kept the information about sarcoidosis and fibromyalgia separate because they are two totally separate conditions. People can have fibromyalgia alone, or it can frequently be a secondary condition for people who already have sarcoidosis or other auto-immune diseases.

2) I also want to find the friends and family of these individuals, particularly those who are, or would become, spousal or family carers/caregivers to the person having sarcoidosis and/or fibromyalgia. The primary caregiver needs to understand that his/her own physical and emotional needs must be addressed, too. I will provide the carers with information about the two diseases, as well as information to help them better understand their own needs as well as the needs of their ill family member or friend.

3) I wish to promote awareness, knowledge, and understanding of sarcoidosis and fibromyalgia to the medical community and general public. In so doing, I want to provide a better understanding of those who must live with "sarcoid" and "fibro" on a daily basis and encourage greater funding for research into the cause(s), treatment, and cure for these two little understood, but frequently occurring, diseases.


~~CONTENTS~~

NOTE: The Contents below lists the major sections of this site. When you click on the topic you wish to view, you will be taken to an introductory page that will provide a brief description of each topic. Each descriptive paragraph will contain links to extensive information about sarcoidosis, fibromyalgia, family caregivers, etc.


Sarcoid Connection Introduction

Sarcoidosis Bits and Pieces

Support and Caring for Sarcoidians and their Caregivers

The Reference Library and Glossary

Fibromyalgia Connection and Information


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TAKE ONE DAY AT A TIME
AND LIVE EACH TO ITS FULLEST.

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In Memoriam
In Memoriam
Dr. Om P. Sharma (1936 - 2012)

Renowned Sarcoidosis Specialist



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NOTE: I invite you to sign my Visitor Comments section, or send me an e-mail if you have any questions or comments about this site, sarcoidosis, fibromyalgia, or caregivers. You may also leave your contact information if you want other people to get in touch with you. Please understand that I may not always be able to respond to queries because of my own health challenges.

Email to:
cmtown@excite.com

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Financial Statement and Disclaimer: This website has been entirely designed and built at the expense of the Webmaster, expressly for free and unlimited access by family, friends, and the general public. Although the content (information) herein is provided for unlimited use by the public, any unauthorized use of formatting (source code) and graphics is strictly forbidden.

The medical information contained on these pages is informational only and should not be construed as a recommendation of any particular form of medical care. Any such medical information should be thoroughly discussed with a licensed medical practitioner before being incorporated into a personal treatment plan.



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Compiled by Chris Townsend, Sarcoid Connection
cmtown@excite.com
Last Modified on January 11, 2013