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How to Recognize Alpha-1 Antitrypsin Deficiency

How Is Alpha-1 Different From COPD?

Alpha-1 is sometimes called "genetic COPD." It can lead to COPD, but it isn't the same.

COPD is a group of two lung diseases: emphysema and chronic bronchitis. Each makes it hard to breathe. Most people get COPD from things that damage their lungs. Smoking is the most common cause.

 Up to 3% of all COPD cases are triggered by alpha-1.

  • People with alpha-1 tend to develop symptoms in their 30s and 40s.
  • People with COPD from other causes are more likely to get symptoms their 60s and 70s.

Can You Have Alpha-1 and Not Know It?

Without testing, you won't know you have it. And not everyone who has it has symptoms. Experts aren’t sure why.

If you have symptoms, your doctor should consider testing you. That's especially true if you had breathing problems at a young age or have a family history of them.

What Can You Expect?

Getting diagnosed with alpha-1 can be a shock. Avoiding things that can hurt the lungs, like cigarette smoke and air pollution, can sharply lower the odds for serious damage.

At its worst, the illness can make it hard to work or care for a family. It can shorten a person's life. Then again, it might not.

Once you know you have it, you can get treatment to stop it from getting worse. 

Campbell, who's in his late 60s, says he's grateful that he was diagnosed and that treatment is working well. As communications director for the Alpha-1 Foundation, he tries to reach the people struggling without a diagnosis -- the people who don’t know anything about the disease. Campbell was once one of them.

"If you have any symptoms, ruling out alpha-1 with a test should be a routine, just like doctors rule out other conditions," Campbell says.

Sandhaus has received funding for clinical studies from CSL Behring, AstraZeneca, Grifols, and Kamada.

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Reviewed on August 13, 2014

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