Breathing Hope!

Every time I tell someone that my father has a disease called alpha-1 they all look at me as if I’m an alien with 5 heads. It’s not because they don’t want to know what it is but it’s just they simply don’t know what it is. I’m willing to explain it to them but the alien look gets old after awhile. It’s one of those things that you have to except. I normally explain to my friends who are all teenagers that it is emphysema but inherited and it affects your liver. I continue by telling them that this is all caused because a protein is not produced in a normal way in liver. The question that normally follows is “is he going to die” generally when that question is asked I’m holding back tears and reply by telling them well not right away but it does shorten his life expectancy. This is part of my life now there is no way to get around it, the other people in my family are going through the same thing and I know that other people effected by alpha know exactly what I’m talking about. I want...

This is my first post in what I hope to be a list of many. I want to share with you what it is like to live in a family that is deeply affected by a disease called Alpha-1. Alpha-1 is a genetic disorder that causes lung and liver disease in people of all ages. (For more information please visit http://www.alpha-1foundation.org/ ) My dad was diagnosed with the disease 2 years ago after many years of struggling to find answers. The disease has caused a physical and emotional strain on my family and many others through out the world. Alpha-1 is widely miss-diagnosed and when I tell most people that my dad has a genetic disorder called Alpha-1 they look at me as if I were an alien from mars. Then I go into what I call the short explanation of what alpha is and then most of them say “I’ve never heard of that” or “wow I didn’t even know something like that existed”. So this is my way of letting people know that yes there is a disease that is genetic that causes lung and liver disease and yes...