Living with Alpha-1

Though there may be some challenges to face, many Alphas have continued to maintain a healthy and fulfilling life with proper treatment and lifestyles changes. With proper 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 to do.


What now?

Now that you or your child is diagnosed with Alpha-1, there are some necessary lifestyle changes that need to take place in order to stay healthy, including:

 

  • Quit smoking and keep away from second-hand smoke

  • Avoid exposure to dust or fumes

  • Exercising regularly

  • Eating well

  • Drinking alcohol with caution, if at all. The consumption of alcoholic beverages can cause damage to the liver in normal people. Many authorities recommend low, infrequent or no alcohol consumption for ZZ patients, and patients with any indication of liver damage should avoid alcohol completely.

  • Review labels of over-the-counter medications, vitamins or herbal supplements carefully. Avoid products with acetaminophen and alcohol, both of which can injure the liver.

  • Advise your healthcare provider if you are taking vitamin supplements or herbal products.

 

There are several treatment options depending on one’s symptons. To learn more, click here.

You may be experiencing 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.

 

  • Education: Knowledge is the key to understanding the diagnosis of Alpha-1. The Alpha-1 Association provides a Patient Information Hotline (1-800-245-6809) 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.
  • Support: The Association has more than 75 Support Groups throughout the United States. The Patient Information Hotline (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.
  • Testing:  For information on Alpha-1 testing, please click here to visit the Alpha-1 Foundation's webpage.
  • AlphaNet: 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.  The BFRG is the only health management program that has been shown to improve health outcomes in people with Alpha-1 Antitrypsin Deficiency (reference:  COPD, volume 6, issue number 1).
  • Click here to view Alpha-1 educational brochures. Please be sure to sign up for our mailing list to receive invitations to meetings and education events in your area and received Community Currents, our e-newsletter.