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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
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.
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Important News and Notes:
October 10, 2012 – Wow! It’s 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 don’t 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 here’s 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, it’s 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.
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TAKE ONE DAY AT A
TIME AND LIVE EACH TO ITS FULLEST.
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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.
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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
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