Living With Alpha-1 Antitrypsin Deficiency
Here's what you'll learn on this page:
Alpha-1 antitrypsin deficiency (Alpha-1) is a chronic, inherited condition that requires lifelong care and consideration. With the right support, regular monitoring, and a plan made with your doctor, you can take an active role in managing your lung health.
Hear what people living with Alpha-1 have to say about managing the condition
Getting answers is the first step
Learning you have Alpha-1 antitrypsin deficiency (Alpha-1) can feel overwhelming. But getting a diagnosis means you can stop wondering and start planning. With the right care and support, you can take control and make a plan with your doctor.
Understanding your results and working with your healthcare team can help you make informed decisions about your lung health moving forward.
*Each patient story reflects the real-life experiences of individuals diagnosed with Alpha-1. Individual experiences may vary. Patients were compensated for their time by Sanofi.
What happens after an Alpha-1 diagnosis?
Alpha-1 antitrypsin deficiency (Alpha-1) is a lifelong condition that may require ongoing care and consideration. After diagnosis, you and your doctor can create a plan based on your Alpha-1 results, symptoms, overall lung health, and risk factors.
Regular monitoring and lifestyle choices can help you stay informed and take an active role in your care. Family members may also want to discuss Alpha-1 testing with a doctor because Alpha-1 can be passed down through families.
Moving forward with Alpha-1
Alpha-1 is a lifelong condition that may require ongoing care and monitoring. Your care plan should be individualized based on factors such as your SERPINA1 genotype, alpha-1 protein level, symptoms, lung function, and liver health.
Regular monitoring can help you and your doctor track your health over time. Talk with your healthcare professional to determine which steps are right for you.
Forms of Alpha-1 care
Aside from current treatment options, other forms of Alpha-1 care include:
Lifestyle modifications
Quitting smoking and limiting exposure to smoke, dust, and pollutants
Staying on top of vaccines
Especially influenza (the flu) and pneumococcal pneumonia (a bacterial lung infection)
COPD treatment
Inhalers and oxygen therapy
Proceduresa
Lung transplantation, endobronchial valve therapy
aFor eligible patients.
What do below-normal alpha-1 protein levels mean for you?
Alpha-1 can affect the lungs and may contribute to progressive lung disease. Knowing your genotype and alpha-1 protein level can help you and your doctor understand your Alpha-1 status and make informed decisions about monitoring and care. Over time, below-normal alpha-1 protein levels may lead to:
Permanent lung damage that can lead to chronic lung diseases like COPD, emphysema, or bronchiectasis. Lung damage related to Alpha-1 can develop or progress before symptoms become obvious. That’s why regular monitoring and ongoing care are important—even when you feel well
Breathing problems that may get worse over time, including shortness of breath, wheezing, and chronic cough
More frequent exacerbations (flare-ups) that often require extra treatment or hospital stays
Difficulty with daily activities such as walking, exercising, or doing household chores
Reduced quality of life and, in cases of clinically severe disease, shorter life expectancy
When alpha-1 protein levels are below normal, there may not be enough alpha-1 protein to help protect the lungs from neutrophil elastase, an enzyme that can damage healthy lung tissue when it becomes overactive. Over time, this may increase the risk of lung damage and related breathing problems.
Can lifestyle factors add to your risk?
Your personal protection shapes your Alpha-1 risk.
The more risk factors you are exposed to, the higher your Alpha-1 risk. Your Alpha-1 risk may decrease if you:
Quit smoking
Avoid air pollution in cities
Avoid hazardous inhalants or dust
Frequently asked questions
What lifestyle changes help manage Alpha-1?
Avoiding smoking, reducing exposure to lung irritants, staying physically active as recommended, maintaining a healthy lifestyle, and keeping up with routine care may help support your lung and liver health.
How should Alpha-1 be monitored?
Monitoring schedules vary based on your genotype, alpha-1 protein level, symptoms, lung function, liver health, and other factors. Talk with your doctor about how often you should have checkups and testing.
Can Alpha-1 get worse over time?
Alpha-1 can contribute to progressive lung or liver disease, sometimes before symptoms become noticeable. Regular monitoring can help track changes and inform your ongoing care plan.
Why are protein levels important?
Alpha-1 protein helps protect the lungs from damage. Measuring your alpha-1 protein level can help your doctor understand how much alpha-1 protein is available and interpret your results alongside your genotype and health history.
Should family members be tested?
Because Alpha-1 is inherited, parents, siblings, and children of someone diagnosed with Alpha-1 may have inherited an Alpha-1 gene variant. Relatives should talk with a doctor about whether testing may be appropriate, even if they do not have symptoms.
Does smoking make Alpha-1 worse?
Smoking can accelerate lung damage in people with Alpha-1. It increases inflammation and can make it harder for the lungs to withstand damage, so avoiding smoking and secondhand smoke is especially important.