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Uncover Alpha‑1 resources

Getting the help you need

Now you know. You or someone you care about has Alpha‑1 antitrypsin deficiency (Alpha‑1, for short). Here are some things you can do to be your own advocate.

Living with Alpha‑1

Since Alpha‑1 is fairly rare, it often takes a while for it to be diagnosed. Finding out you have Alpha‑1 may bring up mixed feelings about what it all means and what to do next. But working with your healthcare team can help you learn to manage your condition. It’s important to exercise, eat healthy, get enough sleep, and follow the plan your healthcare team has recommended. It’s also important to have a community of support that includes family and friends.

What is Alpha‑1? Learn more about Alpha‑1.

Managing life with Alpha‑1

Watch Jim and Julie share what changes they’ve made in their lives since diagnosis.

Video thumbnail of Jim, a real Alpha-1 patient.
Have the conversation with your doctor and get the best management in place as quickly as possible.
-Jim, living with Alpha-1
Female doctor icon.

Talking to your doctor about Alpha‑1

A doctor or healthcare provider will be able to advise you on next steps and put together a personalized care plan.
Here are questions to help with that conversation:

Blue lung icon.

How serious is

Three blue blood samples icon.

What caused it?

Bottle of water and weight icon.

Will it affect my
daily life?

Prescription card icon.

How can it be

Blue blood test icon.

How will it affect
my future health?

Health insurance card.

Does health
insurance cover it?

Could your lung condition be genetic? Download this guide for more information about Alpha‑1, including a discussion guide to help prepare you for conversations with your healthcare team.

How is Alpha‑1 managed? Explore management options.

A resource for Alpha‑1

Even though Alpha‑1 is a rare disorder, support and information are available.

Alpha-1 Foundation logo.

Alpha‑1 Foundation is a not-for-profit corporation that is dedicated to finding a cure.

Additional resources

Here are some other good places you can go for help:

COPD Foundation logo.

The COPD Foundation helps improve the lives of people living with COPD and other lung diseases.

American Lung Association logo.

The American Lung Association is working to make the world a place that is free of lung disease.

NORD-National Organization for Rare Disorders logo.

The National Organization for Rare Disorders (NORD) is a source of support and information for those affected by rare diseases.

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Reviewed by Takeda MARCH 2022.