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Living with Fatty Liver and NASH

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Clinical research study of the genetics of liver disease that runs in families, think about this if your family has cirrhosis

nash2 profile image
nash2Partner
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I have cirrhosis and my sister died of it a year ago so this study is of interest to me personally. It is being done at UC San Diego, which is one of the premier research sites for liver disease, by Dr. Rohit Loomba. Google him if learning what an expert in liver disease looks like interests you.

I just returned from taking five members of my family to participate in the clinical research study. An unusual way to have a family reunion, but this kind of research is important to our learning just why some people get sick and others don't. Participating in clinical trials if you can is important to finding cures for all of us and I encourage you to consider them. Here is a link to information about the study.

medschool.ucsd.edu/som/medi...

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my gastroenterologist ordered genetic testing without asking or telling me. it came back with phenotype PiMS alpha 1 antitryspin deficiency. I was told to have my family tested because they will either have it or be carriers and that this causes you to be at risk for lund and liver disease. Im unaware of the medical conditions of my family my kids' father died of liver cancer. a d I have cirrhosis and secondary liver cancer. Ive been reading all I can on the genetic link especially where the mutated gene I carry comes in to play. I wouldnt wish disease on anyone but the thought of my own kids suffering like this because of something I passed along to them is particularly upsetting.

nash2 profile image
nash2Partner in reply to RainydaySuperstar

Hi Rainy

the antitrypsin test is routine for a liver workup as it has been identified as a cause of cirrhosis. Being genetic it certainly is something for families to think about. A hard road, but if people know they are in the bullseye they can choose to have liver friendly habits earlier in life and avoid much of the problems later though at the present we have no therapy for it.

wayne

TraceyAlbinson profile image
TraceyAlbinson in reply to RainydaySuperstar

My father died of cirrhosis,59 alchoholic ,so at 26yrs Old I quit drinking ,I’m 52 and I feel like I’ve done everything not to be him and now fatty enlarged liver I’m being punished and to have to tell my adult kids about another hereditary screening ,I’ll pray for all of us and the ones that will never be able to fight !

TraceyAlbinson profile image
TraceyAlbinson

Yes they can be more aware by knowing ,/How in this day and age can nothing be done to eradicate the disease ,I feel my whole life has been Disease,cancers ,/diseases Doctorsbim really worn out !

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