COPD TODAY internet resources for COPD
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COPD TODAY: Internet Resources for COPD

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Internet resources for COPD

Introduction

COPD TODAY is an internet magazine providing in-depth information to enable people with COPD, their families, and their caregivers to improve the management of COPD. Each issue includes bibliography, references, and internet materials for additional learning. This document lists and briefly annotates some of the key internet resources we have found. We have classified the sites into several groups, and many sites fall into more than one category.

The categories of the sites are:

This document will be maintained and updated on the Healthy Resources site at http://www.HealthyResources.com/copd/copd-today/linkmaster.html. We welcome suggestions for additional links and categories.

American Lung Association 1740 Broadway, New York, NY 10019, 1-800-586- 4872. The American Lung Association http://www.lungusa.org —For health care professionals and patients. Info includes asthma, tobacco control, air quality, lung diseases A to Z, occupational health, school programs, programs & events, donation programs, data & statistics, research, advocacy, volunteer and job openings. {*}{T} {O}

The National Jewish Medical and Research Center 1400 Jackson Street, Denver, CO. 80206, 303-388-4461. 1-800-222-LUNG. National Jewish http://www.nationaljewish.org/ Call the National Jewish Medical and Research Center toll free line at 1-800-222-LUNG to talk with to a nurse or respiratory therapist, or to request information from a doctor. {*}{T}

National Lung Health Education Program: A program for early diagnosis of COPD Easy to read/understand information about Your Lungs, Spirometry and Stop Smoking for patients. National Lung Health Education Program http://nlhep.org "The prevention of lung disease and the promotion of lung health is the goal of the National Lung Health Education Program" Goal is early identification of patients in the early stages of COPD who absolutely must stop smoking. The idea is to catch the disease in the early stages, even before symptoms are noticed by the patient. Spirometric abnormalities found by a simple test of exhaling can help to identify COPD and also help identify those at risk for lung cancer, heart attack, and stroke, for whom appropriate surveillance, behavior modification, and smoking cessation are critical. Article on New National Strategy by Tom Petty, MD http://www.nlhep.org/NewNationalStrategy.htm More information: Twenty questions http://www.nlhep.org/20questns.htm {*}{S}

American Association for Cardiovascular and Pulmonary Rehabilitation (AACVPR) Rehabilitation programs help people with COPD to improve their health through exercise, better nutrition, appropriate use of medicine, and support. The AACVPR is an organization of rehab professionals and their listings can help you and your doctor locate a qualified rehab program. AACVPR http://www.aacvpr.org/ A site for healthcare professionals. The online “Program Directory” lists over 1,100 rehabilitation programs, including certification of qualified programs. Also lists publications, links, and governmental affairs. 7611 Elmwood Avenue, Suite 201, Middleton WI 53562. 608-831-6989, {*}{T}

U.S. Department of Health and Human Services Healthfinder search http://www.healthfinder.gov search on “lung disease” for an annotated guide to resources. Searching on COPD not as helpful. A site for patients for many diseases, lists links for helpful web resourcers and organizations. {*}

Surgeon General--The Virtual Office of the Surgeon General Smoking Cessation Guidelines http://www.surgeongeneral.gov/tobacco/ Office of the Surgeon General {*}{T} {S}

Agency for Healthcare Research and Quality Help for Smokers: Ideas to Help You Quit. http://www.ahcpr.gov/consumer/helpsmok.htm Based on the U.S. Public Health Service Tobacco Cessation Guideline, released June 2000. Agency for Healthcare Research and Quality, Rockville, MD. {*}{T} {S}

Office of Health Care Information, Executive Office Center, Suite 501, 2101 East Jefferson St., Rockville, MD 20852 1-800-358-929 —Smoking Cessation Consumer Tools Kit http://www.ahcpr.gov/clinic/toolskit.htm—This is a site for clinicians that explains a program for smoking cessation patients. {*}{T} {S}

Centers for Disease Control and Prevention, Office on Smoking and Health 4770 Buford Highway, N.E, Mailstop K-50, (707) 488-5705 CDC'S TIPS—Tobacco Information and Prevention Source http://www.cdc.gov/tobacco/— A site for healthcare professionals and patients: news, research, data, statistics and reports of tobacco, smoking and health database, educational material, keeping kids tobacco, alcohol and drug free, tips on how to quit smoking, Surgeon General’s report and tobacco industry documents. Smoking cessation. {*} {T}

Publications from New Technology Publishing/HealthyResources.com

"If I had COPD, I would want this book."—Henri Colt, MD, Book Review in September 2000 Advance for Managers of Respiratory Care. You can read selections from this book online:Courage and Information for Life with Chronic Obstructive Pulmonary Disease: The handbook for patients, families, and care givers managing COPD, emphysema, asthmatic bronchitis, chronic bronchitis. Written by Rick Carter PhD (exercise physiology), Brooke Nicotra MD (pulmonologist), and Jo-Von Tucker (person with COPD).

Jo-Von Tucker, "The devastation of the diagnosis," a selection from Courage and Information by Rick Carter, Brooke Nicotra, and Jo-Von Tucker.

Diagnosis

Ideally, a pulmonologist should confirm the diagnosis and supervise the treatment for COPD. Diagnosis requires the doctor to take a history and do physical examination. COPD is suspected when the patient reports a history of shortness of breath, cough, phlegm production, or intermittent wheezing together with a history of cigarette smoking and no other obvious cause. Other physical findings found in COPD include abnormal breathing sounds with a long slow exhalation phase, wheezing, crackling sounds. Weight loss and muscle loss may be seen in severe cases. Tests include chest x-rays, breathing tests especially spirometry, arterial blood gas, electrocardiogram, and exercise testing with oximetry.The breathing tests help to establish if lung function is normal or diminished. Summarized from pp57-58 of Courage and Information for Life with Chronic Obstructive Pulmonary Disease. The authors provide detailed, easy-to-read information on all aspects of COPD.

National Lung Health Education Program: A program for early diagnosis of COPD

Easy to read/understand information about Your Lungs, Spirometry and Stop Smoking for patients. National Lung Health Education Program "The prevention of lung disease and the promotion of lung health is the goal of the National Lung Health Education Program" Goal is early identification of patients in the early stages of COPD who absolutely must stop smoking. The idea is to catch the disease in the early stages, even before symptoms are noticed by the patient. Spirometric abnormalities found by a simple test of exhaling can help to identify COPD and also help identify those at risk for lung cancer, heart attack, and stroke, for whom appropriate surveillance, behavior modification, and smoking cessation are critical. Article on New National Strategy by Tom Petty, MD More information: Twenty question {*} {D}

Treatment

There is much that a person with COPD can do to improve health and lifestyle. Start by making sure your doctor is qualified and that the appropriate tests have been run. Once you are sure of the diagnosis, you need to learn more about your options and get information and support. Don't ignore the diagnosis and don't hope for the best—if you are proactive you can stop the damage and have a better quality of life. Courage and Information details available treatments including rehabilitation training, and promotes an effective partnership between the person with COPD and their physician. {T}

Professional Care and Rehabilitation

 
The American Lung Association

1740 Broadway, New York, NY 10019, 1-800-586- 4872. The American Lung Association—For health care professionals and patients. Info includes asthma, tobacco control, air quality, lung diseases A to Z, occupational health, school programs, programs & events, donation programs, data & statistics, research, advocacy, volunteer and job openings.

The National Jewish Medical and Research Center

1400 Jackson Street, Denver, CO. 80206, 303-388-4461. 1-800-222-LUNG. National Jewish Call the National Jewish Medical and Research Center toll free line at 1-800-222-LUNG to talk with to a nurse or respiratory therapist, or to request information from a doctor.

Smoking cessation

The Virtual Office of the Surgeon General

Smoking Cessation Guidelines Office of the Surgeon General

Agency for Healthcare Research and Quality

Help for Smokers: Ideas to Help You Quit. Based on the U.S. Public Health Service Tobacco Cessation Guideline, released June 2000. Agency for Healthcare Research and Quality, Rockville, MD.

Office of Health Care Information, Executive Office Center, Suite 501, 2101 East Jefferson St., Rockville, MD 20852 1-800-358-929 —Smoking Cessation Consumer Tools Kit—This is a site for clinicians that explains a program for smoking cessation patients.

Centers for Disease Control and Prevention, Office on Smoking and Health

4770 Buford Highway, N.E, Mailstop K-50, (707) 488-5705 CDC'S TIPS—Tobacco Information and Prevention Source— A site for healthcare professionals and patients: news, research, data, statistics and reports of tobacco, smoking and health database, educational material, keeping kids tobacco, alcohol and drug free, tips on how to quit smoking, Surgeon General’s report and tobacco industry documents. Smoking cessation.

Publication from New Technology Publishing/HealthyResources.com

"If I had COPD, I would want this book."—Henri Colt, MD, Book Review in September 2000 Advance for Managers of Respiratory Care. You can read selections from this book online: Courage and Information for Life with Chronic Obstructive Pulmonary Disease: The handbook for patients, families, and care givers managing COPD, emphysema, asthmatic bronchitis, chronic bronchitis. Written by Rick Carter PhD (exercise physiology), Brooke Nicotra MD (pulmonologist), and Jo-Von Tucker (person with COPD).

Jo-Von Tucker, "The devastation of the diagnosis," a selection from Courage and Information by Rick Carter, Brooke Nicotra, and Jo-Von Tucker.

The sources listed include readings available online, online information and support sites provided by individuals or organisations.

Readings

Robin Lord, The courage to breathe: Chatham woman offers heartfelt advice to others diagnosed with chronic obstructive pulmonary disease From The Cape Cod Times, Health & Medicine section.

Jo-Von Tucker, “Don’t Volunteer for Loneliness,” in Airwaves Forum 2

Jo-Von Tucker, "The devastation of the diagnosis," a selection from Courage and Information by Rick Carter, Brooke Nicotra, and Jo-Von Tucker.

Organisations, support groups, and online meeting places {O}

The Department of Genetic Medicine at Weill Cornell Medical College is
offering a support group for those diagnosed with COPD (Chronic Obstructive
Pulmonary Disease) to come together for mutual support, comfort and
friendship. For more information: http://copdsupport.wordpress.com

The American Lung Association Better Breathers Clubs

The American Lung Association Better Breathers Club: Check with your local hospital; the American Lung Association has state and local groups that can direct you, call the national office at 1-800-586- 4872 or try their web site for listings of affiliated local groups. 1740 Broadway, New York, NY 10019, 1-800-586- 4872. {O}

COPD-Support, Inc.

This site has 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. COPD-Support, Inc.COPD-Support, Inc. P. O. Box 490714 Ft. Lauderdale, FL 33349 {O}

EFFORTS

EFFORTS is a non-profit organization, formed, funded and operated by people with emphysema, working to promote research for emphysema and related lung diseases. It also provides a very vital support mailing list and educational resource for it's members without charge. {O}

Bill Horden’s web site

Bill Horden’s web site—Written and presented by a highly motivated activist patient dedicated to informing and helping others. A site for patients with a lot of information and helpful links on the disease and how to cope with it (A COPD Survival Guide, a cookbook, and many links). Bill provides interesting articles and worthwhile links and an email newsletter providing news and with emphasis on activism and advocacy. To subscribe to the newsletter, THE COPD ADVOCATE," go to http://www.COPDadvocate.com, and enter your information at the ListBot box. {O}

Respiratory News and Views

Respiratory News and Views, published by the Asthma/Emphysema Self-Help Group, P.O.Box 20321, Tompkins Sqare Sta. New York, NY 10009 John Leaman, Editor (212) 777-0486

Ask Jo-Von COPD Patient-to-Patient

Jo-Von Tucker, co-author of Courage and Information, has been on supplemental oxygen 24 hours a day, 7 days a week for 12 years and has exceptional practical knowledge. She will answer questions pertaining to living and coping with COPD, establishing a partnership with your physician in managing your illness, and encouraging compliance with treatment programs.Ask Jo-Von

Ron Peterson's web site

Ron Peterson's web site Smoking Information; Exercise Information; Product Information; What's New.

Olivija's Pages

Olivija's Who Am I The many facets and interests of a person who has COPD but is not defined by COPD.

Olivija's COPD Resources Selected links

Olivija's COPD Resources More quotes and links.

Alpha1-antitrypsin deficiency

Alpha1 National Association

Alpha1 National Association —Alpha1-antitrypsin deficiency is a cause of emphysema and COPD. “A non-profit, membershhip organization, dedicated to improving the lives of individuals and their families affected by alpha1-antitrypsin deficiency.“ A site for health care professionals and patients. A lot of info from all aspects about A1AD, Alpha1 Association, support and resources, legislation, medical and research, and various links. 8120 Penn Ave South Suite 549, Minneapolis, MN 55431-1326, 1-800-521-3025

Alpha One Foundation—Alpha1-antitrypsin deficiency is a cause of emphysema and COPD. “The vision of the organization is to advance the means to control and cure A1AD and to improve the quality of life for those with the disorder.” A site for healthcare professionals—research and registry, Team Alpha1, A1AD news There is interesting information for patients as well with answers to many questions about A1AD. 2937 S.W. 27th Avenue, Suite 302 Miami, Florida 33133 Toll Free: (888) 825-7421, 305-567-9888, Fax 305-567-1317

Healthy Resources™

HealthyResources.com provides access to discussions and support among people with COPD, news and information, and products. It includes the web page for Courage and Information and is a service provided by New Technology Publishing, Inc. —A site for patients to learn about COPD and sleep apnea and preview informative books on these subjects.

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