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You can be upset
because rosebushes have thorns

  Or you can rejoice
because thorn bushes have roses.

                                         Author Unknown


 

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Welcome To

The Family of COPD Support Programs

 

We would like to welcome you to the web site home of the COPD (Chronic Obstructive Pulmonary Disease) Family of COPD Online Support Programs.  The List uses the ListServe and other methods to distribute e-mail to subscribers of the family of COPD Lists.  Presently there are over 1,200 subscribers world wide representing a number of countries and cultures.  Hereafter referred to as "The List", there really is no single list. Rather, there are a number of programs intended to help meet the needs of individuals afflicted with COPD, caregivers who are responsible for an individual so afflicted, and medical personnel who have a particular interest in pulmonary medicine in general and COPD  in particular. 

Purpose

The List was established to provide support and education, and as a forum for sharing ideas and solutions in dealing with this affliction. Subscribers are encouraged to participate in the discussion, though they are entitled to just "lurk" if they so choose. The List, and thus this web page, was established to bring together people affected by COPD. It is here to help us communicate with one another; to share ideas and knowledge; to support one another; and to live longer, better quality lives. 

 This web site and our COPD programs have been put together by individuals with COPD or COPD caregivers.  It has had little professional medical input. While we believe that our accumulated experience has value, and a unique perspective, you must accept it for what it is ... the work of COPD patients. We vigorously encourage individuals with COPD to take an active part in the management of their disease.  They do this through education, and by sharing information and thoughts with their primary physician and pulmonoligist.  However, medical decisions are based on complex medical principles and should be left to the medical practitioner. 


 

About COPD

Chronic Obstructive Pulmonary Disease, or COPD, is a disease that encompasses one or more of the following:

Emphysema can best be characterized as the progressive destruction of the grape-like sacs that fulfill the lung's basic function: exchanging oxygen in the air for carbon dioxide in the cardiovascular system. Emphysema is the chief "culprit" in COPD.

Chronic Bronchitis is a first step toward impending emphysema/COPD. It often results from "ordinary" chest infections (colds, flu). Folks with chronic bronchitis know that every, or nearly every, cold they get will "go straight to the lungs". With proper care it need not lead to COPD. In a COPD patient chronic bronchitis contributes to the "gunk" that we spit up regularly (there's no pretty way to say it)

Chronic Asthma  is the third constituent of COPD. Not all COPD patients have asthma, and most certainly most asthma patients do not have COPD. But many of us suffer from it greatly. Already sick, our airways are easily constricted by all manner of airborne nasties. It is why we carry our inhalers. Some authorities do not consider asthma a component of COPD because unlike emphysema and chronic bronchitis, asthma can be reversed.

What are the signs?

Symptoms vary somewhat from one individual to another. However, most of us have experienced most of these:

Shortness Of Breath after normal-to-light exertion is an important sign and something that needs medical attention.

A lingering, or even constant cough. If a cough lingers long after a lung infection has cleared up something is wrong.

A history of lung problems. Chest colds don't clear up like they do for other folks... they linger. Maybe you've had flu several times, or worse, pneumonia.

Other family members have been diagnosed with emphysema. Perhaps your family carries the gene responsible for Alpha1 Antitrypsin Deficiency which is a brand of emphysema brought on by an enzyme  deficiency and which may be contracted even though the individual has never smoked.

Where to go from here

Persons with COPD/Emphysema can most certainly lead productive, fulfilling lives. How we handle our disease, and its effects, is very important.

If we sit back and let it take charge, then it will. We may decline rather rapidly; our spirits suffer; normal activities become major obstacles.

However, if we take charge then we can dramatically affect the progress of the disease, learn that we can still lead quality lives, and be proud. At whatever stage of the disease, this simple approach can make an important difference.

   Here's How

These web pages are but a beginning. But through them you can start the journey to improving your life  and your spirits - in a significant way. There are many excellent COPD sites on the net. Our web links page can be your jumping off place to these valuable resources.

   Join One Or More Of Our Programs

Our internet mailing list (e-mail) is an excellent way to stay in touch with other COPD/emphysema patients and care givers. We are patients, some with mild lung problems, some with quite severe. We are also care-givers and friends of COPD patients. We are sons and daughters as well as health care professionals. If the volume of mail inherent in an online support mailing list is too much, or if you just want additional information then you might look into one of our other programs which include a Caregivers Online Support List, COPD Newsletter, Buddy Groups, SmokeNoMore Program, chatroom with scheduled chats, a link page with only top notch information which has been reviewed by our staff, and a listing of member pages which may be of interest. So, if you are interested in any of our programs, click here for a trip to the table of contents at the top of the page and choose what suits you.

The list began in January 1997 when six or seven people were solicited to participate in this experiment in information sharing. By our first anniversary we had grown to 267 members. We now have members on every continent except Antarctica.We share knowledge of the things that have helped us, and the things that have hurt us. We stay informed regarding treatments and medications. But, most of all, we give one another the encouragement and support that is so important to our lives. Many of us become very dear friends. If you are interested in becoming a subscriber please read both the explanation of what to expect as a list member as well as our posting guidelines and then join us. We hope you will introduce yourself to us soon.

Financial Base

There is no charge for your subscription. However, sponsorships, donations, and memorial gifts are welcome! The hosting of our list, by outside hosts and our other programs do cost money. Subscribers pay these costs with voluntary contributions, however, we would prefer that new subscriber to any of our programs do NOT sponsor until they have at least 45 days with us. This will allow adequate time to determine if your subscription provides you with a necessary and lasting support. While we certainly welcome such contributions, please do not believe that they are necessary. We're kind of like public television -contribute if you think we're performing a service that makes a difference in your life or the life of someone you love. If you're not sure, or can't afford it, then that's OK too and we understand. Contributions are all used to defray added costs of running the various programs and individuals serving as List Management are not paid for their time, labor, or the use of their computer equipment.

COPD-Support, Inc. has been recognized by the Internal Revenue Service as a non profit organization under the definitioin
provided in Internal Revenue Service Code 501(c)(3). As such, donations to the organization may be tax deductable the same as other charitable organizations. Donations will be acknowledged and should be forwarded to:

COPD-Support, Inc.
P. O. Box 490714
Ft. Lauderdale, FL 33349

  Our programs are mostly based on e-mail. When unscrupulious individuals clutter our mailboxes with SPAM (unsolicited commercial email), they are affecting our quality of life. As such, COPD-Support, Inc. is also in support of the activities of the SPAM Recycling Center and recommends that you check out their site and recycle the SPAM sent to your private email boxes. Any SPAM sent to the various programs will be reported by our management team.


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