| Lungs_OnLine Learn about a variety of lung diseases and conditions as well as diagnostic testing information. |
| Medco_Health Research respiratory conditions or browse detailed drug information related to respiratory conditions. Features include interactive tools and related news. |
| MedicineNet__FocusOn_Lungs Offers topics covering a variety of disorders, including procedures and tests, alongside news and a discussion boards. |
| No_Air_To_Go Provides information concerning Idiopathic Pulmonary Fibrosis and Sarcoidosis, including diagnosis and treatment. Includes a glossary, links and a chatroom. |
| NTMinfo_com Offers information about nontuberculous mycobacteria, including symptoms, tests and treatments. |
| OHSU_Health__Respiratory_Disorders Overview, symptom and treatment information plus basic anatomy. |
| Pulmonary_PAP Discussion group for people with pulmonary alveolar proteinosis. Scheduled weekly chat sessions. [Membership required.] |
| Pulmonology_Channel Resources on diagnosis and treatment of a variety of pulmonary conditions. Includes a forum and video presentations. [Real Player required.] |
| RadiologyInfo__Chest_Radiography Information for patients concerning chest xrays. |
| Respiratory_Medicine Includes information on asthma, copd, cystic fibrosis, telemedicine, spirometry, scientific publications, meetings and pulmonary medicine. |
| RXinsider__Cough Basic information for patients. |
| TrachyVentList Group for people living with a tracheostomy and or ventilator, their families, friends and carers. Information on how to join plus profiles of members. |
| Vocal_Cord_Dysfunction General information on this condition. |
| Center_for_Research_on_Chronic_Illness Current research by the Carolina School of Nursing, pilot projects, publications on specific diseases as well as in general on preventing and managing chronic illness in vulnerable people. |
| Chronic_Conditions Advice on managing the health team, staying as healthy as possible, trying complementary therapies, maintaining a sense of humor, working at being optimistic. |
| Chronic_Disease__Forming_Healthy_Relationships Advice for doctors and health workers on treatment and support of chronic ill patients. [PDF] |
| Chronic_Disease_Management British Columbia resources for physicians, patients and researchers. Includes success stories, self-management program, reports, research and Chronic Care Model. |
| Chronic_Disease_Management Model based on cooperation between providers to improve patient health and outcome. The Calgary Health Region also advises on regional strategy, community care coordinators, and patient class details. |
| Chronic_Disease_Prevention Overview by National Center (USA) offers statistics, state programs, risk surveillance and risk factors per state. |
| Chronic_Disease__Prevention_and_Management Calgary Health Region to host its second international conference from October 29 to November 1, 2007. Registration opens October 2006. |
| Chronic_Disease_Surveillance_in_Canada Background paper also proposes multi-partnered data base renewal (2003). [PDF] |
| Chronic_Health_Conditions_not_a_Barrier_to_Successful_Aging Advice on 'successful aging' with good management of several chronic conditions by HealthLink, the Medical College of Wisconsin. |
| Chronic_Ill_Net Patients, doctors and researchers discuss diseases: Gulf War Syndrome, Chronic Fatigue Syndrome, AIDS, biological and chemical weapons. Many articles. |
| Chronic_Ill_Net Multimedia information source dedicated to chronic illnesses including AIDS, cancer, Persian Gulf War Syndrome, autoimmune diseases and neurological diseases. |
| Chronic_Illness__Acceptance_Is_the_First_Step_Toward_Healing Short description of the day to day acceptance process. |
| Chronic_Illness_Coping Lists articles including lessons from Christopher Reeve, treatment of whole person, psychological control, and coping techniques. |
| Chronic_Illness_Tips A personal account of strategies for daily living. |
| Coping_with_a_Chronic_Illness_in_your_Family Advice to family members, including communication, financial matters, independence and taking charge. |
| Coping_with_Chronic_Illness Patient information publication of the Warren Grant Magnuson Clinical Center at the National Institutes of Health (USA). |
| Coping_with_Chronic_Illness An academic paper discusses illness in terms of stages, with a description of each in terms of its relevance to patients. |
| Coping_with_Chronic_Illness The Fathers Network on how to deal with physical, emotional and spiritual aspects. Applies to anyone with a longterm disease. |
| Coping_with_Chronic_Illness_and_Depression How to recognize depression and when to consult the doctor. [PDF] |
| Coping_with_Long-term_Physical_Illness_and_Pain Short explanation to counselors on defense mechanisms and coping styles of patients. |
| A_Day_in_a_Life_with_Chronic_Illness A personal account of daily events aims to promote better understanding. |
| Diet,_Nutrition_and_the_Prevention_of_Chronic_Diseases Combined World Health Organization and Food and Agriculture Organization expert report on prevention of obesity, diabetes, cardiovascular diseases, cancer, dental diseases and osteoporosis. [PDF] |
| Expert_Patients_Programme_for_Long-term_Patients Self-management course for confidence, skills and knowledge to manage chronic health conditions. Provides newsletter, explanation of program, people's views. |
| Faced_with_a_Life_Threatening_Illness_ Questions, concerns and links provided by Australian Palliative Care Council. |
| Family_Caregiver_Alliance National Center on Caregiving offers fact sheets, advice, research reports, public policy briefs, and newsletters. |
| Guidance_for_People_Facing_Serious_Illness Handbook gives short, practical advice how to handle serious illness and dying. |
| Health_Action_Network A volunteer non-profit organization helping to rehabilitate people with chronic mental or physical illness into the community. Includes details of training and resources. |
New!
What
is Pulmonary Fibrosis?
Pulmonary
Fibrosis involves scarring of the lung. Gradually, the air sacs of
the lungs become replaced by fibrotic tissue. When the scar forms, the
tissue becomes thicker causing an irreversible loss of the tissue’s
ability to transfer oxygen into the bloodstream.
What are the
symptoms?
Shortness of breath, particularly with exertion
Chronic dry, hacking cough
Fatigue and weakness
Discomfort in the chest
Loss of appetite
Rapid weight loss
What is the
prevalence of Pulmonary Fibrosis?
There are
five million people worldwide that are affected by this disease. In the
United States there are over 200,000 patients with Pulmonary Fibrosis. As
a consequence of misdiagnosis the actual numbers may be significantly
higher. Of these more than 40,000 expire annually. This is the same as
die from Breast Cancer.
Typically, patients are in their forties and fifties when
diagnosed. However, diagnoses have ranged from age seven to the
eighties. Current research indicates that many infants are afflicted by
Pediatric Interstitial Lung Disease. At this time there is limited data
on prevalence for this group.
What are the causes?
Traditional theories have
postulated that it might be an autoimmune disorder, or the after effects
of an infection, viral in nature. There is a growing body of evidence
which points to a genetic predisposition. A mutation in the SP-C
protein has been found to exist in families with a history of Pulmonary
Fibrosis. The most current thinking is that the fibrotic process is
a reaction to microscopic injury to the lung. While the
exact cause remains unknown, associations have been made with the following:
Inhaled environmental and occupational pollutants
Cigarette smoking
Diseases such as Scleroderma, Rheumatoid Arthritis, Lupus and Sarcoidosis
Certain medications
Therapeutic radiation
How is it treated?
There are
currently no effective treatments or a cure for Pulmonary Fibrosis. The pharmacological
agents designed to treat lung scarring are still in the experimental
phase while the treatments intended to suppress inflammation have only
limited success in reducing the fibrotic progress.
Because
the origin and development of the disease is not completely understood,
misdiagnosis is common. Varying terminology and lack of standard
diagnostic criteria have complicated the gathering of accurate
statistics about people with pulmonary fibrosis. Supplemental oxygen
improves the quality of life and exercise capacity. Single lung
transplant may be considered for some patients. Pulmonary Fibrosis is a
very complex disease and the prediction of longevity of patients after
diagnosis vary greatly.
There are
a number of new trials testing drugs to treat Pulmonary Fibrosis.
For more information contact us at:
Pulmonary Fibrosis
Foundation
1332 North Halsted Street Suite 201
Chicago, Illinois 60642-2642
(312) 587-9272 fax (312) 587- 9273
Last
updated
June 27, 2008
Last updated
June 27, 2008
