Idaho Alpha-1 Website
Alpha-1 Information

Sponsored by Idaho Alpha-1 Community Outreach, Inc.
Kuna, ID

 


Idaho Alpha-1 Community Outreach, Inc., is a non-profit, 501(c)3 corporation. Our goal is to educate the medical community about Alpha-1 Antitrypsin Deficiency and to provide ongoing support to those diagnosed with this devastating disease. If you would like to donate to us, we will soon have a link to a PayPal affiliated donation site. As a recognized 501(c)3 Idaho organization, donations to IACO may be tax deductible per IRS regulations.

Worldwide, it is estimated that 116 million people (25 million Americans) are carriers of the disease. The World Health Organization (WHO), The American Thoracic Society (ATS) and the European Respiratory Society (ERS) recommends that all individuals with COPD, as well as adults and adolescents with asthma (an estimated 20 million Americans) be tested for AAT deficiency or Alpha-1.

The World Health Organization (WHO), American Thoracic Society (ATS), and the European Respiratory Society (ERS) recommend that all individuals with COPD be tested for Alpha-1.

If you or someone you know have any signs or symptoms of;  "shortness of breath" difficulty breathing, or have a family history of unknown breathing difficulties or perhaps have been told, you just have allergies or a type of asthma or broncitis", ask to be tested for Alpha-1. A small change in life styles can save years of breathlessness down the road.

Alpha-1 Antitrypsin Deficiency, is a hereditary condition which may result in serious lung disease in adults and/or liver disease in infants, children & adults.

The most common signs and symptoms of disease caused by Alpha-1 are:

  1. Shortness of breath
  2. Wheezing
  3. Chronic cough and sputum (phlegm) production (chronic bronchitis)
  4. Recurring chest colds
  5. Eyes and skin turning yellow (jaundice)
  6. Swelling of the abdomen (ascites) or legs
  7. Vomiting blood (from enlarged veins in the esophagus or stomach)
  8. Decreased exercise tolerance
  9. Non-responsive asthma or year-round allergies
  10. Unexplained liver problems or elevated liver enzymes
  11. Bronchiectasis

Alpha-1 has been identified in virtually all populations and ethnic groups.  It is estimated that about 1 in every 2,500 Americans have Alpha-1.

Individuals with Alpha-1 may remain healthy throughout their lives. Early diagnosis and avoidance of risk factors, such as cigarette smoking, can help prevent Alpha-1 from causing disease.

An estimated 20 million people have one normal and one defective AAT gene. People with one normal gene and one defective gene (for example MZ) are called “carriers”. Carriers may pass the defective gene on to their children.

Alpha-1 can lead to lung destruction and is often misdiagnosed as asthma or smoking-related Chronic Obstructive Pulmonary Disease (COPD).

Alpha-1 can’t be diagnosed by symptoms or by a medical examination; you need to get a blood test to know for sure.

Alpha-1 is the most common known risk factor for emphysema and COPD.

About 3% of all people diagnosed with COPD may have undetected Alpha-1.

Alpha-1 can lead to liver disease. The most serious liver diseases are cirrhosis and liver cancer.