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jen39
Member

Alpha 1 Antitrypsin

My mother passed away from Alpha1 Antitrypsin , she was 62 yrs old. We only knew she had alpha1 for the last 5years of her life. Alpha1 was not even known about until 1962, at which time my mother was already 18 and well onto her way to smoking. She was misdiagnosed for the next 39 years. As a resault the damange was devastating. Our family has all been tested and have genes ( all except my daughter). My mothers phenotype was PiZZ. Some are as follows, PiZZ, PiSZ and PiZ/Null, all includes liver disease. There is also PiNull/Null, ZZ , MS, MZ, MM,which does not include liver disease, (there are many more phenotypings for different regions). If you have been told you have walking pneumonia, asthma or emphysema be sure to have your doctor run tests for aplha1. These were all the diseases my mother was told before it was discovered she had something much more deadly. This is a subject that is VERY serious to me, enough so that this is my first attempt to quit smoking, and hopefully my last. I know whats in store for me if I fail too many times. I have done alot of research on this disease. I would be happy to share that knowledge with anyone whom has questions.
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Jen, welcome to our group. I'm sorry about your mother and sorry you carry the gene. I was tested for Alpha-1 recently and was told I do not carry it. My mother and my brother both have emphysema as do I but we all just simply smoked too much and that is how we got it. I'm sure there will be others here who will benefit from your knowledge. If there are any links that you can share with us, I'd love to put them on the main page. If there is anything we can do to help you in your quit, please let us know. Some of us have quit a few days under our belts and loads of information to help you on your journey.
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