Newly Diagnosed with Alpha 1 Antitrypsin Deficiency

Being diagnosed with AAT deficiency can be life changing and may cause emotional, physical, familial and, often, financial challenges. It is important to have good communication with your team of healthcare providers as they will help you in all aspects of the management and treatment of AAT deficiency. 

Find Out All You Can about AAT Deficiency

Learn about AAT deficiency related COPD, the symptoms and severity of the disease, ways to treat and manage it. It is important for you to understand how this disease is going to impact your health, other health conditions you have and what steps you need to take to best manage your disease. You should also discuss with your healthcare provider genetic testing or counseling for immediate family members to find out if they may be carriers of AAT.  

Learn About Your Treatment Options  

Work with your healthcare provider to determine how serious your diagnosis is and what your treatment options are available.  

  • Take the COPD Basics course to learn more about managing and treating COPD. 
  • Understand the role of COPD medications and other treatment options if you are diagnosed with AAT deficiency- COPD.  
  • Find out more about the role of palliative care in managing your disease. 
  • Talk to your healthcare provider to find out if a clinical trial would be right for you. 

Connect With Others

You do not have to face living with lung disease alone. It is important for you to have support from others. Joining an online or in-person support group can provide you with more opportunities to get information about your disease, empower you to manage your disease, and provide the support you need. Available programs and services through the American Lung Association include: 

  • Living with Lung Disease (Inspire online support community) 
  • Better Breathers Clubs (in-person and virtual support groups) 
  • Freedom From Smoking (in person or virtual quit smoking programs) 
  • Patient and Caregiver Network (online support community with access to resources and educational opportunities) 
  • Lung HelpLine (Respiratory therapists, tobacco cessation counselors, or nurses can help answer your questions about living with lung disease and connect you to resources) 

Financial Concerns

If the cost of medical treatment is a burden for you and your family, talk to your healthcare team about your concerns and see what options are available. You can learn more about financial assistance  that may be available to you by contacting the Lung HelpLine. 

Reviewed and approved by the American Lung Association Scientific and Medical Editorial Review Panel.

Page last updated: October 2, 2023

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