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What Is Alpha-1?

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Frequently Asked Questions

1. Who is at risk of Alpha-1 (A1AD)?
2. What are the symptoms of Alpha-1 ?
3. Does everyone with Alpha-1 (A1AD) have symptoms?
4. How is one tested for Alpha1?
5. Why is it important to have a test?
6. What Is Involved in Testing for Alpha-1 (A1AD)
7. What will a test tell me?
8. How will I get my test results?
9. What do I do if a test shows I have Alpha1?

1. Who is at risk of Alpha-1 (A1AD)?
   If you have a family history of A1AD, lung or liver disease or any of these medical problems:
   • Chronic Obstructive Pulmonary Disease (COPD)
   • Emphysema
   • Bronchiectasis
   • Chronic bronchitis
   • Asthma
   • Chronic liver disease
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2. What are the symptoms of Alpha-1 ?
   • Shortness of breath at rest or with exercise
   • Wheezing
   • Coughing
   • Frequent and long-lasting lung infections
   • Sputum (or phlegm) production
   • History of  allergies or asthma
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3. Does everyone with Alpha-1 (A1AD) have symptoms?
   No! People with Alpha1 might not show any signs of A1AD for several years. This doesn’t mean that they won’t have symptoms later on. However, carriers are those who have the gene, but generally do not show symptoms.
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4. How is one tested for Alpha1?
   Alpha 1 is detected by a simple blood test that will determine the level of AAT present in your blood. This tests your blood for certain proteins that indicate whether or not you have A1AD.
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5. Why is it important to have a test?
   It is important to increase your knowledge and awareness of A1AD and your personal risk. If the deficiency exists, testing will help you and your family to:
   • understand what steps to take to slow the progression of the disorder.
   • make decisions about occupational and reproductive issues.
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6. What Is Involved in Testing for Alpha-1 (A1AD)?
   You can go to your doctor and request to be tested for A1AD. A free test kit is available from the Alpha1 National Association by calling toll-free 1-800-521-3025 or emailing
   A1NA@alpha1.org
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7. What will a test tell me?
   The blood tests will determine the level of alpha1-antitrypsin (AAT) protein in your blood and show whether or not you have the A1AD disorder, or if you are a carrier or hopefully, that you do not have the A1AD disorder at all.
   
   It is important for your physician to know what level of AAT you have circulating in your blood. If your test shows you have alpha1, your doctor can use this information in planning your future treatments.
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8. How will I get my test results?
   Your doctor gives the results to you.
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9. What do I do if a test shows I have Alpha1?
   Here are some suggestions to follow if your test shows you have alpha1:
   • Speak with your physician about your specific medical condition and the impact of the disorder on your current medical state.
   • Evaluate various treatment options.
   • Stop smoking tobacco (if you do smoke) and avoid secondhand tobacco smoke as much as possible.
   • Avoid exposure to dust and fumes.
   • Develop an exercise program (under medical supervision).
   • Develop a nutritional program (under medical supervision).
   • Contact the Alpha1 National Association for more information.
   • Join an Alpha1 Support group.

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Updated May 25, 2005