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Alpha 1 Antitrypsin Deficiency-Liver Disease
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Alpha 1 Antitrypsin Deficiency-Liver Disease

A family member was recently diagnosed with Alpha 1 with the ZZ genotype. He is 43 yrs old. He is one of four children. His older sister (age 45, also diagnosed with ZZ) along with the younger brother (age 33,don't know what genotype). My question is this....The 43 yr. old man...has end stage liver disease....the 45 yr old sister was diagnosed with Sarcoidosis last yr....still waiting for test results for the 33 yr old....can anybody give me some feedback?
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Avatar_f_tn
I have alph 1 just diagnosed this past january.  I am 39 years old.  Wasn't diagnosed till late in life because I don't drink or smoke excessively.  My grandfather, and two uncles died from the disease in their 40's.  I'm the only grandchild with the active disease.  My sister and three kids are carriers of the disease.  I guess the disease is that our livers cannot create the enzyme that supports healthy lung tissue and we will eventually succumb to emphysema/copd like patients.  No cure.  Just meds to make us feel better.  Drinking and smoking cause the disease to progress faster.  Typically found in Irish decent.  There are some really good web sites out there in Ireland where all of the research is done for the disease.  Good luck to you and your family.  I pray for mine every day.
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Avatar_m_tn
hey i got a friend that has alpha-1, and he is really bad on pain killers, he does not take them as prescribed, and he used to snort them before going to the hospital and being in a coma from the snorting of the pills further infecting his lungs...well now he claims to not snort them anymore, but he still goes through his prescription in like a week, between selling them to buy other stuff and taking way too many...he always justifies this to me as his disease causes him all this pain...sometimes i just wanna be like dude stop being a *****, and i want to tell him that he just has an opiate problem,  dont use your disease as an excuse...but is it possible that alpha-1 can actually cause enough pain to be legally prescribed pain-killers?  or did he just go doctor shopping until he found one that would be albe to use that as an excuse to get his business?
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Avatar_n_tn
Alpha1 is extreemly painful. I have had abcesses cut out of my chest [25 of them] that had to be packed and unpacked twice a day. i have had abcesses cut out of my legs and several surgerys. all were directly or indirectly caused by alpha. Even when nothing appears to be wrong with me I am still in constant pain.
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Avatar_m_tn
2 years ago i got hcv and alpha 1 that dr just found on lab reports from 2 yrs ago i stay in cronic (chronic) pain bot no dr in my area wants to treat for the pain because of the bad drug use in the area reg low dose meds dont even help my wife has also hcv but not any of the problems i do.    I need help.  If you could give me some good advice call me at 6067927995   thank you if can help JOE
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