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.
Join the Alpha-1 Research Registry and become part of helping find a cure for Alpha-1.
The goal of the Registry is to encourage Alpha-1 research. Since Alpha-1 is relatively rare, a registry with a large number of Alphas makes it much easier and faster for scientists to carry out research studies. By joining the Registry, you can help to find better treatments and a cure for Alpha-1. Only the Registry will contact you; no one else will ever receive your personal information. The Registry is conducted under the direction of Charlie Strange, MD, at the Medical University of South Carolina.
Learn more about the Alpha-1 Research Registry.
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.
REACH is a free program offered through AlphaNet, Inc. for ZZ Alphas (and others with serious genotypes that cause severe deficiency) who are not receiving augmentation therapy. REACH provides the tools, information and support needed to help you stay well. Click here for more information.