Alpha1 Antitrypsin Deficiency and liver fibrosis

[Kat-1986]

My daughter was diagnosed with Alpha1 Antitrypsin deficiency at 8 weeks old she is now 6 and was doing really well until her most recent appointment, we have been told that she now has fibrosis of the Liver. We are just awaiting her blood results for a plan to be put in place. I was just wondering if anyone else has had a similar experience and what we can expect going forward.

[annexxxjarrett]

Hello Kat, you must be worried about your daughter, and I feel for you. I think this is fairly common with Alpha-1, but each case will be different depending on how its effect on the liver progresses. I imagine your daughter will probably need a biopsy if she hasn't already had one - this is quite straightforward - then the medics will come up with a plan. Sometimes it can be managed, and sometimes a liver transplant may be needed at some point. My experience goes back a very long way, but my daughter was diagnosed at 10 days old, and by three and a half she needed a transplant. At the time it was terrifying, but she is now many years post transplant and is very well and healthy, and will be 29 this year. I wish you and your daughter all the best. X

[Kat-1986 in reply to annexxxjarrett]

Thank you Anne is so reassuring to hear others experiences especially as your daughter is now doing so well xx

[chrisrock]

Alpha 1 antitrypsin generally leads to chronic liver disease... Gradually the liver becomes fibrotic.. Initially supportive medicines are given but if there is extensive fibrosis and liver functions are deteriorating then liver transplant can be offered...