r/A1AD

Hello, I am extremely new to A1AD so please excuse me if I use incorrect terminology. My husband and I both underwent genetic testing last summer when I was pregnant. We each came back as carriers for A1AD: my variant was specified as S, his was only characterized as “likely pathogenic.” We understand this puts us at a 25% risk of our child being positive for A1AD.

We lost that baby, and subsequently forgot to worry about it and continue our research. Now we would like to try again for a child, but I’m reminded of my trepidation with these high odds.

The genetic counselor I spoke to last summer told me that she would recommend against testing my baby for this disorder (after birth) as it would affect her ability to get insurance for the rest of her life. Is this everyone’s experience? Can anyone who has been in a similar situation give me guidance? Is the only responsible decision not to procreate?

Hello! I randomly got a notice in June from 23andme (seems like this is the norm) that I had the genotype SZ. I got my provider to order the AAT test and it came back at 61. I know that is low. What do I do at this point? I had to tell my provider what Alpha-1 is so I don't think she is going to know.