Alpha one Antitrypsin

[pwillia3]

Hello all, i just recently found out I have stage 3 fibrosis, also that I have a genetic disorder called Alpha one antitrypsin which attacks the liver and lungs. Has anyone else heard of this.

[pushthrough]

Pwilla I never heard of it. I would speak with your liver specialist right away and get on a treatment plan to stop the progression of liver damage. You really don’t want to reach f4. Hopefully there is medication you can take. I wish you the best.

[AyrshireK]

There are a few forum members with this condition. BLT has a downloadable fact sheet. britishlivertrust.org.uk/in...

[Hidden]

Hi,

Here is our information on Alpha1 that may be helpful to you;

britishlivertrust.org.uk/in...

[bleeny]

Hi - my husband and his identical twin have this but so far so good. They have regular blood tests and no problems have arisen yet. They are 56 years old.

[Readlots]

Hi Pwillia, I have alpha 1 antitrypsin deficiency. I also have autoimmune hepatitis and primary biliary cirrhosis, so a bit of a triple whammy for my liver. I was diagnosed in 2008. Alpha 1 is a genetic condition, although both my parents tested negative so no idea where it came from with me. My husband got tested when I was diagnosed because we were worried about our children. He’s negative so the kids will be carriers but not have active disease. We were offered genetic counselling which helped. We’re at the stage where they might want to get tested with their partners before they think about having children of their own.

There are several different ‘illeals’ (combinations) of Alpha 1 - I’m ZS. I’m 54 and it hasn’t had a massive effect on me apart from fatigue. I did have a flare which affected my lungs about 10 years ago when I was working in central London and caught a chest infection. I think the infection + pollution made me pretty I’ll. I was monitored for a couple of years with regular breathing checks but then got signed off.

I’m careful now about avoiding pollution, smoke and chemicals. I also try and avoid catching colds etc ( Covids been a challenge) and go to the doctor straight away if I do get Ill so that I can get antibiotics if I need them. Good luck with your Alpha journey.