Living with Alpha-1
Many Alphas live a healthy and fulfilling life with proper treatment and lifestyle changes. With planning, education, support and most importantly, patience, it is possible to continue to work, travel and exercise and do the many things that you enjoy doing.
When you or your child is diagnosed with Alpha-1, there are some lifestyle changes that need to take place in order to stay healthy, including:
- Quit smoking if you do, and keep away from second-hand smoke.
- Avoid exposure to dust or fumes.
- Exercise regularly.
- Eat well.
- Drink alcohol with caution, if at all. Alcoholic beverages can cause damage to the liver even in normal people. Many authorities recommend low, infrequent or no alcohol consumption for ZZ patients, and patients with liver damage should avoid alcohol completely.
- Review labels of over-the-counter medications, vitamins or herbal supplements carefully. Be careful with products containing acetaminophen and alcohol.
- Advise your healthcare provider if you are taking vitamin supplements or herbal products.
After the Alpha-1 diagnosis, you may feel uncertainty, anger, fear, guilt, grief, and frustration. These are all normal feelings. Your next step is to learn how to cope with these feelings. Below are health management resources.
Knowledge is the key to understanding the diagnosis. A Patient Information Line (1-800-245-6809) is available for your convenience to access a multitude of resources including printed information and one-on-one peer connections with other Alphas and physician referrals if needed. Our free and confidential Genetic Counseling Program (1-800-785-3177) can help you understand your test results and provide information about family inheritance/risk factors, testing options, health management and other resources.
The Foundation has more than 80 Support Groups throughout the United States.
- The Patient Information Line (1-800-245-6809) will connect you to a local or virtual support group.
- We also provide a Peer Guide Program (1-877-346-3212) connecting you with another Alpha who has a similar situation.
- Our Genetic Counseling Program (1-800-785-3177) is available to you if you have questions about how Alpha-1 affects your family members.
Family testing for Alpha-1 could improve the lives and health of the people you love. If you have Alpha-1 Antitrypsin Deficiency (Alpha-1) – or are an Alpha-1 carrier – we suggest that your relatives be tested. Learn more about family testing.
The Alpha-1 Foundation has a network of Alpha-1 Clinical Resource Centers where you can find a specialist in the treatment of Alpha-1.
The treatment options depend on your symptoms.
Transplantation and surgical options
Lung or liver transplantation may be a viable option for some Alphas with the most severe lung or liver disease. Patients must have extensive damage to the lungs or liver to warrant transplantation. They must be referred to a specialized transplant center and undergo extensive physical and psychological testing before being accepted on a transplant list.
Lung volume reduction surgery (LVRS) is not usually the best approach for an Alpha with lung disease. The type of lung disease that most ZZ Alphas get is basilar diffuse disease with a low diffusing capacity. Both of these (basilar diffuse disease and low diffusing capacity) make it likely that the outcome of LVRS will be worse than doing nothing. While there are a number of Alphas who do well after LVRS, they are far fewer than those who are turned away, have no improvement after LVRS, or die soon after LVRS.
To access AlphaNet's Big Fat Reference Guide or BFRG, the most comprehensive guide and self-management program available on the Internet for individuals living with Alpha-1, please click here: BFRG You will be asked to register so that a personalized version of the BFRG can be displayed each time you visit and you can be notified of updates.