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Subject ALPHA-1 ANTITRYPSIN DEFICIENCY -- edited and shortened !

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[quote:Lindalee:MV8yMDEwMzI2XzRFNjEzNQ==]
Ok, I was just diagnosed this past week with Alpha-1 antitrysin deficiency , which is a genetic condition. I received an abnormal gene from both parents, some people receive one normal gene and one abnormal gene.

It is a simple fingerstick blood test in the Dr's office, yet it is not something that they routinely test for !  It wasn't even "discovered" or named until 1963, even then, they don't hardly test anyone !  Why, I don't know ......
There is no cure.

Everyone in my family now needs to be tested, they can refuse if they want to just bury their head in the sand, some of them are freaking out.   Now that I have a diagnosis, I learned that I can have a standing order for antibiotics any time I feel sick,...Also they are finding out that the genetic condition is not as rare as they once thought, thousands of people are walking around with this deficiency and needs the IV infusions to save their lungs ! That's why I'm posting links for my GLP friends   :hf::hf:

http://www.alpha1.org/newly-diagnosed/how-is-alpha-1-diagnosed

http://www.alpha-1foundation.org/alphas/?c=07-Alpha-Stories

http://www.emphysema.net/patient_stories.htm

http://www.alpha-1foundation.org/files/Recently_Diagnosed.pdf
[/quote]

Original Message Ok, I was just diagnosed this past week with Alpha-1 antitrysin deficiency , which is a genetic condition. I received an abnormal gene from both parents, some people receive one normal gene and one abnormal gene.

It is a simple fingerstick blood test in the Dr's office, yet it is not something that they routinely test for ! It wasn't even "discovered" or named until 1963, even then, they don't hardly test anyone ! Why, I don't know ......
There is no cure.

Everyone in my family now needs to be tested, they can refuse if they want to just bury their head in the sand, some of them are freaking out. Now that I have a diagnosis, I learned that I can have a standing order for antibiotics any time I feel sick,...Also they are finding out that the genetic condition is not as rare as they once thought, thousands of people are walking around with this deficiency and needs the IV infusions to save their lungs ! That's why I'm posting links for my GLP friends

[link to www.alpha1.org]

[link to www.alpha-1foundation.org]

[link to www.emphysema.net]

[link to www.alpha-1foundation.org]

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