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Now that you or a family member have been diagnosed with Alpha-1, there are some steps that you can take immediately to impact your health.

Health Tips:

Number one: if you smoke, stop now! No other single factor can improve an Alpha's chance for survival as much as stopping smoking. Inhaling smoke into the lungs summons massive amounts of neutrophil elastase to the lungs. What's more, cigarette smoke renders the available alpha-1 antitrypsin useless.

Avoiding irritants such as chemicals, pollution, dust, and ozone is also extremely important. Protecting yourself against lung infections, when possible, is highly advisable. Most physicians recommend pneumonia vaccines and annual flu shots.

It's best to err on the safe side: any type of irritant, bacteria or virus that could make its way to the lungs should be avoided. This includes pollen, ash, wood burning stoves, etc. Limiting these risks-and thus reducing the amount of neutrophil elastase needed in the lungs-can have a profound effect on limiting lung damage.

To take care of the liver, drink alcohol rarely if at all. Also, be sure to read labels of over-the-counter medications or herbal supplements very carefully. Be sure to tell your healthcare provider about vitamins and supplements you take. You should also avoid chemicals that can be absorbed through the skin. This includes bleach, ammonia or other cleaning solvents.

Importantly, the same things that are good for everyone are good for Alpha patients: exercise, diet, and generally taking care of oneself are crucial to maintaining a good quality of life once you have Alpha-1. With Alpha-1, an ounce of prevention is the key.

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 Center (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 Service (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 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.