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Alpha-1 Antitrypsin Deficiency - just been diagnosed

Lung Health | Last Active: Oct 11 1:10pm | Replies (53)

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@windwalker

@nancyjac, Hi Nancy. Your story reads like mine. Well, sort of. I had the 'asthma' diagnosis for years, and the numerous pneumonias since my 30,s. I am like Bill, I am an MZ carrier with the same low score of 112. For some reason, carriers can get serious lung diseases too. I am so sorry to hear that your test came back positive for it. I pray that it stays at this level or even improves with treatment. Bill is right, if you are positive AND smoke, it will put you on a fast track to death. That is what happened to my mother who was ZZ and smoked. She died at age 58, way too young. That can be a hard diagnosis to take, but, please know that Alpha-1 can affect people differently. Some people have it and don't get sick at all, and some have it where they are sick to some degree, while others get very ill. I see that Bill provided you with the Alpha-1 link. I have been on it myself, it will give you a lot of helpful information. You can sign up for their newsletters and find out if there is a physical support group near you.

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Replies to "@nancyjac, Hi Nancy. Your story reads like mine. Well, sort of. I had the 'asthma' diagnosis..."

@windwalker, Terri, in this post you mentioned a low score of 112..... what is that from. The information I got on my alpha 1 test was that I was a MZ and then had a 82? So what does that mean? And my next question is can drs. tell if you copd is caused by smoking or by alpha 1. Is there a difference in the appearance of the lungs on the ct scans...…….. Thank you