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 Welcome to the Alpha-1 Association. You are probably here because you or a family member has just been diagnosed with Alpha-1. Perhaps your doctor didn’t tell you much about it. Perhaps he or she told you he has never had a patient with Alpha-1. At this point you have more questions than you have information. The Association is here to help you understand the diagnosis and provide you with the education and support to empower you in coping with Alpha-1.
A serious genetic (inherited) diagnosis can leave you feeling afraid and unsure of what to do next. This can be a very difficult time for you and your family. It is often overwhelming to think about the care, the treatment options, possible lifestyle changes and the effects this will have not only on your life, but on your immediate family. A diagnosis of Alpha-1 could impact your family including brothers, sisters, children and grandchildren and possibly your extended family members.
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. You accomplish this through a step-by-step process of:
- 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.
The most important message to share with you today is that you are not alone! The Association is here to help you—to answer your questions, refer you to physician specialists, provide you with literature, refer you to other resources, and, if you wish, to connect you with other Alphas who have faced this diagnosis and who are taking charge of their health and their life!
Please be sure to sign up to our mailing list to receive invitations to meetings and education events in your area and received our Community Currents, our e-newsletter.
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