Anyone with an Alpha-1 Antitrypsin Deficiency child with liver problems?
Kimberly G asked:
My daughter was diagnosed with alpha-1 because of a fatty liver a couple years ago. She is about to turn 5 y/o. I can’t find anyone else in my town with a child with it since it’s usually diagnosed at age 30’s or 40’s because of the lung complications. BTW she also has cystic fibrosis. Anyone else with little children with Alpha-1?
Cystic Fibrosis
My daughter was diagnosed with alpha-1 because of a fatty liver a couple years ago. She is about to turn 5 y/o. I can’t find anyone else in my town with a child with it since it’s usually diagnosed at age 30’s or 40’s because of the lung complications. BTW she also has cystic fibrosis. Anyone else with little children with Alpha-1?
Cystic Fibrosis
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Hemorrhoid Symptoms
Hi! My 6 year old daughter recently had a liver transplant due to Alpha 1. She was diagnosed at 3 months and put on the transplant list at 4 years. The liver related form of alpha 1 is rare and rarer still to affect a child. Unfortunately some cases do exist for unknown reasons as my daughter is a prime example of. Is your daughter in any way affected by the alpha 1 or the fatty liver? Or is she able to continue living a normal life so far?
Hemorrhoid Cure
I am an adult with Alpha-1. There are several really good organizations you shoud contact. One is actually for Alpha-1 kids. They are listed below.
Alpha-1 Kids -
Alpha-1 Foundation -
Alpha-1 Association -
The Alpha-1 Association can provide you with a genetic counselor free of charge.
There is also an online support group for liver affected Alpha’s. Several on there are parents of children who have had transplants. Very knowledgable bunch of people that would be glad to answer your questions and just be there for support and friendship. They are really a nice group.
You can find them at:
home.ease.lsoft.com
Choose – Browse online archives
Scroll down and choose Alpha-1Liver
There is a box on the right hand side where you can subscribe to the list.
If you need help let me know and I can get someone to help you get signed up.
My email is
Hope this helps. I know it can be scary.
Neva Maynor
WV Alpha-1 Support Group Leader