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Alpha-1 Links

These are just a few links that we know are solid, honest, and trustworthy as we’ve dealt with them ourselves. (NOTE: November is Alpha-1 Antitrypsin Deficiency Awareness Month, help to get the word out.)

Alpha-1 antitrypsin is a protein that is produced mostly in the liver. Its primary function is to protect the lungs from neutrophil elastase. Neutrophil elastase is an enzyme that normally serves a useful purpose in the lung tissue—it digests damaged or aging cells and bacteria to promote healing. However, if left unchecked, neutrophil elastase will also attack healthy lung tissue. Alpha-1 antitrypsin, in sufficient amounts, will trap & destroy neutrophil elastase before it has a chance to begin damaging the delicate (healthy) lung tissue. Consequently, if an individual doesn’t have enough alpha-1 antitrypsin, the enzyme goes unchecked and attacks the lung.

Most people have two normal copies of the alpha-1 antitrypsin gene. People with Alpha-1 (deficiency) may have one normal copy and one damaged copy, or two damaged copies. Most Alphas with at least one normal gene can produce & release enough alpha-1 antitrypsin to stay healthy. People with two damaged copies of the gene can’t produce or release enough alpha-1 antitrypsin, which can cause several conditions. They are often diagnosed with emphysema as their primary disease. Other common diagnoses include COPD, asthma, chronic bronchitis, and bronchiectasis. Alphas are usually quite susceptible to lung infections. In the Alpha-1 patient, any of these conditions can cause further damage if they aren’t treated.

If you or someone in your family have been diagnosed with COPD, emphysema, or Alpha-1 Antitrypsin Deficiency, check out these links to find more information and remember, you are not alone!

Alpha—1 Links

Alpha-1 Association, a member-based not-for-profit organization. Their website contains information, events, support group information, and so much more.

Alpha-1 Foundation, provides leadership & resources to increase research, improved health, detection, and a cure for Alpha-1 Antitrypsin Deficiency.

University of Florida—Researching Alpha-1 Antitrypsin Deficiency. If you are interested in current research—this is the place to go.

Get Tested—guidelines, symptoms, family history. Information you will need.

The Idaho Alpha-1 support group—great group, awesome leadership. These are the best in the Pacific Northwest.

A great MedlinePlus article on Alpha-1 Antitrypsin Deficiency. Good information—easy to read—illustrated.

The COPD Foundation is a great resource for everyone— patient, caregiver, physician-associated with COPD. It is an amazing website and group.