I've just found out I have it after being diagnosed with Emphysema 9 years ago, I asked at the time if there was a possibility of Alpha 1 and the GP I saw said not to be 'silly' as I would be dead already ( 49 at the time ) ??? last year same doctor seemed to think I was secretly smoking! ??? ( I packed it in 9 yrs ago! ) I can't seem to find much info and was wondering if
it's a faster decline in lung function, thanks for reading and any thoughts...huffferpuffer
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hufferpuffer
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My sister is antytiptrin deficient and I am partial deficient,it is hereditary ,my sis is 66 with severe emphysema ,and not dead yet.I do know that tha Q E hospital in Birmingham was doing trials as my sister was involved.The Internet is also a good source.I also inherited IPF from my mother..,and I also have emphysema ,ain't life a sh.. As far as I am aware antytiptrin deficiency in itself does not kill you as it is a deficiency ,your lungs do not have the protection that others do.Hope this helps.
alpha 1 is not always hereditry (though in my case it is ) a friend of mine has it due to pneumonia in childhood.My diagnosis is Alpha 1 AD,my mother had it,my two nephews have it and I'm happy to say my 3 sons have all been tested and are clear.From what I've been told because I have copd too it does have a big impact on my life span.however I intend to take really good care of myself ,take all my meds and live a good life.xxx
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