Living with Alpha-1 Antitrypsin Deficiency
What to Expect
Patients who are diagnosed with AAT deficiency before symptoms occur usually have better outcomes than those who are diagnosed at later stages after symptoms occur. People who smoke have a higher likelihood of developing lung disease at an earlier age and are more seriously affected.
Managing AAT Deficiency
AAT deficiency may or may not limit your long-term survival. Once diagnosed, several steps can be taken to control disease symptoms and result in a normal life. It is important to stop smoking and avoid exposure to secondhand smoke. Additionally, you should protect yourself from environmental dusts or workplace exposure to toxic substances. It is important to exercise regularly, eat healthfully, and maintain optimal weight. If you have symptoms of emphysema, use your prescribed treatment. If you have a lower exercise tolerance due to lung symptoms, you should consider enrolling in a pulmonary rehabilitation program, offered at many locations. In patients with severe emphysema, surgical treatment to reduce the size of over-expanded lungs or referral for lung transplantation may be offered. Apart from this, it is important to limit excessive alcohol use, as it can harm your liver. In certain cases, you may be offered AAT replacement therapy. AAT replacement is a costly treatment, and individuals who use it may experience side effects, making it unavailable as an option for some individuals.
The Lung Association recommends patients and caregivers join our Living with Lung Disease Support Community to connect with others facing this disease. You can also call the Lung Association's Lung HelpLine at 1-800-LUNGUSA to talk to a trained respiratory professional who can help answer your questions and connect you with support.
More information about AAT deficiency can be found at Alpha1.org.
It is estimated that there are between 80,000 to 100,000 individuals affected by AAT deficiency in the United States. You will be referred to an AAT specialist by your primary care doctor. If you have trouble traveling to the specialist, the Alpha-1 Foundation may offer travel vouchers to help. If you need support, the Alpha-1 Foundation support group network may be helpful. There are 80 affiliated support groups that provide support to alpha-1 families, caregivers, and information about pre- and post-transplant care. Support groups are available in most states. In addition, several others local foundations offer support groups a well.
Approved by Scientific and Medical Editorial Review Panel. Last reviewed August 4, 2016.