Lindalee Offer Upgrade
User ID: 3177816
United States 10/06/2012 08:06 PM
 Report Abusive Post Report Copyright Violation | 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   [ 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 Lindalee on 10/06/2012 10:53 PMCircling the Sun @ 63,000 MPH <3 |
Lindalee (OP)
User ID: 3177816
United States 10/06/2012 08:28 PM
 Report Abusive Post Report Copyright Violation | 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 !  Circling the Sun @ 63,000 MPH <3 |
Lindalee (OP)
User ID: 3177816
United States 10/06/2012 10:57 PM
 Report Abusive Post Report Copyright Violation | Re: ALPHA-1 ANTITRYPSIN DEFICIENCY -- edited and shortened ! for the condensed version, maybe more people will click on the links ?  Circling the Sun @ 63,000 MPH <3 |