21, Female
Alpha-1 Antitrypsin Deficiency
I was only a baby. My twin sister was jaundiced when we were born. When they found out she had alpha-1, they tested me too.
I was only a baby.
I was always aware of it growing up as we had regular hospital visits and I was on medication. I suppose it's only since my teens that I've really started to ask questions to try and understand the disease more.
I travel, and enjoy (t-total) nights out. I am studying languages at University and have my sights set on my dream career of interpreting. It helps that I have an incredibly supportive group of friends and family, but it really doesn't have a huge impact on my life at all.
Not at the moment.
I go once a year/ every 2 years, though it used to be every 6 months or so.
I have blood tests and ultra sound scans to check things are still working well!
I sometimes feel like I miss out on the big Uni nights out, when I am the only sober one in the corner! But I know I am lucky that it doesn't affect me otherwise. So there's not really a bad thing. Good things: The CLDF community and support.
I worry that it will get worse and that I might not be able to do all the things I want to do when I am older. And that, if I decide to have children, I might pass it on to them.
There's always hope!
Thank you CLDF =)