ALPHA-1 ANTITRYPSIN DEFICIENCY

Support for People With Alpha-1

Many people diagnosed with Alpha-1 feel a sense of anxiety, or despair, or loss of control. All of these are normal reactions. If you have been diagnosed with Alpha-1, you are not alone. There are people who can help you learn to cope with these reactions.

Many medical professionals — doctors, lung specialists, geneticists, genetic counselors, mental health professionals, nutritionists, social workers — can help people cope with this inherited condition and develop a prevention and treatment plan.

Other resources, such as support groups and foundations, connect people who have a personal or family history of Alpha-1 with each other. The important thing to remember is that there are many other people familiar with Alpha-1who can help.

Learning more about Alpha-1 and how it is inherited can help people identify other family members who are at risk for the disorder. It can also help with family planning, for those considering having children.

Carrier screening is available for the partners of people with Alpha-1. Prenatal testing to determine whether a fetus has Alpha-1 (when parents are affected or are carriers) is also available when both parents are known to be carriers of Alpha-1.

 

Reviewed By:

  • Katherine A. Rauen MD, Ph.D

Authored By:

  • Elissa Levin MS, CGC

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