Discussions By Condition: Liver conditions

Alpha-1 Liver Disease

Posted In: Liver conditions 1 Replies
  • Posted By: Anonymous
  • August 1, 2011
  • 08:30 AM

Hello, I have read many of the post from the last few years on this site. I want to make everyone aware of Alpha-1 Liver Disease that I have. I am 45. It is a Genetic Disease. My Brother also was diagnosed with it in the Spring of 2010. He passed on in the Spring of 2011 at the young age of 55. I was diagnosed 8 months ago after Genetic Testing confirmed that I was also an Alpha. We were not aware of anyone in our family tree ever having a Liver problem so it can jump many generations. If you or someone you have known has had Unexplained (non-alcoholic) Liver problems or Cirrhosis please follow this link: www.Alpha-1foundation.org Most physicians are not educated on this disease. One Doctor told me they spent only half a day discussing it in all their total years of Medical School. I cannot stress enough the importance of taking the matter of being tested into your own hands. And also if you currently have a Liver Problem do not waste another second....go to a Liver Specialist! If a Physician is not a Liver Specialist and is treating someone with a Liver Problem then I have this message specifically addressed to them: "If you are not a Liver Specialist Do Not Attempt to Treat The Liver!!!! There are approx. 20,000,000 Carriers of Alpha-1 in the U.S. alone. Only 100,000 have so far been identified. Only 10,000 Alphas with the Allele Genes such as ZZ have been identified. Out of these 10,000, 2,000 Alphas have it effecting their Livers and approx. 8,000 have it effecting their lungs(COPD). Your Doctor cannot look at you and say you look like someone who has Alpha-1 Anti-trypsin Deficiency. The only way to know is to have the Gene Test done. The Medical University of South Carolina (MUSC) is leading the Research on Alpha-1. They are offering Free and Confidential Gene Testing at the present time being Aug., 2011. When you go to the linked website you will see "Get Tested" on left side. Everyone Please Be Tested! You Could Help Save A Life and One Life Saved Is A True Miracle! Unexplained Liver Disease now has a name and it is Alpha-1 Anti-Trypsin Deficiency. Everyone Take Care!

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  • Thank you for posting this info about Alpha-1 Liver Disease. I am going to get the free testing from the Alpha-1 Foundation website. I was diagnosed 2 years ago with Stage 1 Cirrhosis and my doctors said most likely it was from Alcohol. I have never been a big drinker, maybe once or twice a month on socially. I have had doubts about their diagnosis of my cirrhosis since day one. Just maybe this could be the underlying cause. I watched all the videos of the people who have Alpha-1 on the website. Some of them it affected their lungs and some their livers. I had never heard of this liver disease until now. My doctors never mentioned it. The Alpha-1 Foundation seems to be pushing strong toward a cure so that is wonderful!
    Jason in Miami 1 Replies Flag this Response
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