Re: Sandie - Sandie - A1ATD

[Guest guest]

I don't know if I've been tested. I've had asthma when I was a child.It was bad. Attacks could last for days. You are saying it could havebeen A1ATD??What would be the treatment for this?

Barbara

Don't let me alarm you, first off.

A1ATD is a genetic disorder..something a lot of us are born with. Question. Does anyone in your family, your mother, father, siblings have lung problems..liver problems?

Treatment for A1ATD/lung symptomatic is augmentation therapy. There are several augmentation treatments on the market now. Zimira..Aralast and Prolastin. Prolastin, being the oldest and original IV augmentation therapy and the one I'm on. I call it my liquid gold.

Aside from IV treament ( weekly for the rest of our lives, or till we're tx'd..) it's the typical meds..I use albuteral, of course ( my knight in white armor and I never leave home w/out it just in case I become spastic) Advair, and Spiriva. WE all have basically the same treatments..tests performed etc, as we're all lung symptomatic ..some worse than others, some better.

Remember, I stated earlier this is liver/lung. If you're born liver symptomatic then you're going to be dealing w/other organ issues. Here's a link to one of the websites to one of our youngest alpha babies. She was born Liver..

Two links..one to the fundraiser page and the second is Sophia's own website journalling her journey w/this fatal disease.

Remember..Myself, " I " am lung affected. Sophia was born liver affected ..read more on the Alpha1 website I sent you..all your questions should be answered there..a ton of information..

Sophia Boyer's Campaign - Home

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Sandie in MD

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