tag:blogger.com,1999:blog-10665946.post4908544358409074446..comments2023-08-12T09:50:06.698-05:00Comments on Unique But Not Alone...life with the Alpha Girls: Newborn Screening for Alpha-1 Antityrpsin DeficiencyJenhttp://www.blogger.com/profile/12860934723471342394noreply@blogger.comBlogger4125tag:blogger.com,1999:blog-10665946.post-74309646843405358922008-09-28T23:58:00.000-05:002008-09-28T23:58:00.000-05:00Jen:I just found your blog by doing a Yahoo search...Jen:<BR/><BR/>I just found your blog by doing a Yahoo search for "alpha-1 ..." and "newborn screening." I am so happy to find you! My daughter was diagnosed at age 3.5 with alpha-1 (SZ) after developing an enlarged, fatty liver that was actually caught a year earlier (we just didn't know the cause for a year). Part of the delay in diagnosis is that she (and a brother) also have cystic fibrosis and the pulmonary docs assumed her liver issues were due to that. I took her to a gastroenterologist on a whim who made the additional diagnosis. Her liver is totally fine now after being on Ursodiol.<BR/><BR/>I have never been able to find another mom with an alpha child. Everyone keeps telling me it never shows up until adulthood, but obviously that's not true! <BR/><BR/>Can you tell me how they would screen for alpha in newborns? Would they just do a genetic test for the types (S, Z, etc)?<BR/><BR/>You can contact me at kimberly@guthco.com<BR/>KimAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-10665946.post-9004543387305063822008-09-23T22:59:00.000-05:002008-09-23T22:59:00.000-05:00Well done, Jen! You are such an amazing advocate ...Well done, Jen! You are such an amazing advocate for the Alpha community -- praying that advances like this one keep coming.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-10665946.post-85054010231158657292008-09-21T15:54:00.000-05:002008-09-21T15:54:00.000-05:00Hi,My name is Tammy and I blog at www.prayingforpa...Hi,<BR/><BR/>My name is Tammy and I blog at www.prayingforparker.com as well as at www.5minutesforspecialneeds.com where I am the managing editor. <BR/><BR/>I'd love to have you do a bit of guest posting for us on live with your girls and help raise awareness of live in the Alpha 1 community.Tammy and Parkerhttps://www.blogger.com/profile/16591163985710800183noreply@blogger.comtag:blogger.com,1999:blog-10665946.post-15087657647382919782008-09-20T18:16:00.000-05:002008-09-20T18:16:00.000-05:00Congrats Jen! I know how important this is to you...Congrats Jen! I know how important this is to you!! You are such an example a proactive mother!!! Big hugs!Anonymousnoreply@blogger.com