Welcome to the Alpha-1 Association. You are probably here on this website 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 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 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 your children and grandchildren. 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 Hotline (1-800-245-6809) for your convenience. A multitude of resources are available to you from printed information to one-on-one discussions with other Alphas. You may also email questions to info@alpha1.org.
- Support. The Association has more than 70 support groups throughout the United States. The Patient Hotline will connect you to a local support group. We also provide a Peer Guide Program connecting you with another Alpha who has a similar situation. A Genetic Counseling Service (1-800-785-3177) is available to you if you have questions about how Alpha-1 affects your family members.
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, to recommend a physician, to provide you with literature, to refer you to other resources, to connect you with other Alphas who have faced this diagnosis and who are taking charge of their health and their life!
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