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ALPHA-1 ANTITRYPSIN DEFICIENCY -- edited and shortened !

 
Lindalee
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User ID: 3177816
United States
10/06/2012 08:06 PM

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

[link to www.alpha1.org]

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

[link to www.emphysema.net]

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

Last Edited by Winter Rose on 10/06/2012 10:53 PM
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Lindalee (OP)

User ID: 3177816
United States
10/06/2012 08:28 PM

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Re: ALPHA-1 ANTITRYPSIN DEFICIENCY -- edited and shortened !
My post was already much longer than I had intended for it to be , but I did forget to add something....since the test is so simple to collect , a fingerstick of blood, and since so many people are walking around with breathing problems, I can't help but wonder WHY this AAT deficiency is not routinely screened for ?
Perhaps the insurance companies do not want to pay for the expensive IV treatments ? Maybe they've instructed DR's to not routinely test people for this ? It sounds like a medical thriller novel I've read in the past, but this is real, people !

hiding
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Lindalee (OP)

User ID: 3177816
United States
10/06/2012 10:57 PM

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Re: ALPHA-1 ANTITRYPSIN DEFICIENCY -- edited and shortened !
bump

for the condensed version, maybe more people will click on the links ?

peace
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