Alpha-1 Antitrypsin Deficiency Support Group

Alpha 1-antitrypsin deficiency (A1AD or Alpha-1) is a genetic disorder caused by reduced levels of alpha 1-antitrypsin in the blood. It can lead to emphysema and, in some cases, to liver disease. Symptoms of alpha-1 antitrypsin deficiency include shortness of breath, recurring respiratory infections, or obstructive asthma that does not respond to treatment.

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saawweatpea 02/17/2015

I see nobody has written anything here in 4ever, but it's worth a shot to see if anybody looks or can direct me to a group that is active.

I was just diagnosed yesterday. I'm 43 and my liver almost shut down two years ago. The only reason i'm diagnosed now is because of my trouble breathing so my doctor performed the blood test last week friday and i just found out yesterday.

More am I terrified that I passed this to my boys. my youngest son has asthma and my oldest always has colds and bronchitis.

I have things lined up for the breathing testing to see where I'm at with the progression of COPD and will know more later.

Anyway, hello if anybody is here.

SweetPea

thp636 02/27/2015

I'm sorry that you were diagnosed with this. I'm just a carrier although I do have chronic asthma so who knows if the carrier status caused this or not.
Anyway, I hope that you're feeling better.

Whatsauname 03/01/2015

There is a very active COPD group on Daily Strength.

Many of the members have great advice to share w/you. You can belong to several different groups on DS.

The breathings tests that you mentioned are probably Pulmonary Function Tests (PTF). These test results will inform your doctor about the stage of your disease. Whatever stage you are at ,please keep in mind that COPD is a very long term progress and when it is identified and treated properly it can be several decades before it interfere with an active lifestyle.

I wish you luck with your doctor visit and hope to see you on Daily Strength COPD member list.

j

alexy65 03/01/2015

I just turned 50 and was diagnosed a little over a year ago. There is a lot of information out there for you. One of the best sites i have found is: http://alpha-1foundation.org/what-is-alpha-1/. I have 4 children at this point 1 is positive and 1 is negative. I am an MZ with COPD. I am now retired and a full time stay at home mom.

tillerc 02/02/2016

I have always had allergies, asthma, bronchitis, pneumonia since a child. Mom and her mom died of COPD or complications. I just found out about Alpha 1 and being tested shortly. I am wondering why the docs never added 1+1. COPD groups here are informative and great people

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