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What Every COPD Patient Should Know
About Alpha-1 Antitrypsin Deficiency

Alpha-1 Antitrypsin Deficiency (AAT Deficiency or Alpha-1) is one of the most common serious hereditary disorders in the world and can result in life-threatening liver disease in children and adults or in lung disease in adults. 

Alpha-1 has been identified in virtually all populations.  An estimated 100,000 Americans and a similar number in Europe have the deficiency. 

Alpha-1 is widely under-diagnosed and misdiagnosed.  

·         Less than 10% of those predicted to have Alpha-1 have been diagnosed--it often takes an average of three doctors and seven years from the time symptoms first appear before proper diagnosis is made.  

·          Alpha-1 can be detected by a simple finger- stick blood test.

Alpha-1 is more prevalent than Cystic Fibrosis (CF).  An estimated 25 million people in the U.S. are undetected carriers of an abnormal gene that causes Alpha-1 and may pass the gene on to their children.  

·         Recent research suggests that some Alpha-1 Carriers may be at risk for lung and/or liver disease. 

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

·         Lung disease is the most frequent cause of disability and early death among affected persons – striking in the prime of life -- and a major reason for lung transplants. 

The World Health Organization (WHO) recommends that all individuals with COPD be tested for Alpha-1.

 Free Alpha-1 test kits may be obtained by calling 1-877- 2 CURE A1  (228-7321).   This test may be administered at home or by your physician. The physician’s contact information must be completed on the test card and the results will be mailed only to that physician. Your test results will be part of your permanent medical record.

 Confidential tests are also free of charge and available by calling the Alpha-1 Research Registry 1-877-886-2383.  These tests may be administered at home and the results will be sent directly to you.

 Those individuals considering testing need to understand the potential benefits and risks involved in genetic screening.
This is called informed consent.  Please refer to the
What is Alpha-1 brochure for details.

This information provided by:
Alpha-1 Foundation

See these other articles in our library:
What is Alpha-1 ?

An Article by our staff based on
U.S.National Heart, Lung and Blood Institute (NHLB) information

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Last modified: July 9, 2003
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