Alpha-1. Antitrypsin: does anyone have... - British Liver Trust

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Alpha-1. Antitrypsin

Ghops profile image
3 Replies

does anyone have any info about this? My daughter has just been diagnosed as a carrier.

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Ghops
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BritishLiverTrust3 profile image
BritishLiverTrust3AdministratorBritish Liver Trust

Dear Ghops,

I am just sending some information on this from the British Liver Trust website.

britishlivertrust.org.uk/in...

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

Readlots profile image
Readlots

Hi Ghops,

Take a look at the BLT link that BLT3 has suggested and at this American site alpha1.org/what-is-alpha1/. When you are reading, remember that your daughter is just a carrier so won’t actually suffer from the disease herself. However, it may have implications for her children depending on whether or not their Dad is also a carrier. She will probably be offered genetic counselling.

I have A1AT (SZ) and have avoided the worst symptoms so far (I’m 54). My 2 children are therefore carriers. As I was diagnosed when they were little my husband was tested and he was negative, so like your daughter our children don’t have the disease but are carriers. They know that when they decide to start a family they may want their partners to be tested in case they are also carriers. This was the hardest part for me.

Weirdly, although it is a genetic disease, neither of my parents tested positive. I’m not adopted so I asked the consultant where it came from. He said ‘well it has to start somewhere’.

It’s a big thing to find out and you may all need support coming to terms with it so treat yourselves gently and remember: just a carrier, so may never affect her or kids if their father is all clear.

confused71 profile image
confused71

I have Alpha 77 years of age never smoked or drank alcohol -seem to take longer to getrid of cough when i get one which is rarely --I have also Nash liver disease but changed lifestyle ---My daught er is a carrier at 53 but because she has asthma she was told to behave as if she is fully deficient take precaution near smoke or candles etc --shehas never smoked --again lifestyle choices make a difference I am SZ Alpha

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