I've been asked to provide a patient's perspective at an Alpha-1 Foundation Critical Issues Workshop in September regarding newborn screening for Alpha-1.
I'm a little nervous about this, but mostly because I feel so passionate about the subject. I know that this can be a sensitive subject, and as you may have guessed, I support newborn screening for Alpha-1. This is especially based on my own experience with having 2 children diagnosed, but I became quite passionate about it after Grace's newborn screening results. Alpha-1 was not included in Wisconsin's testing in 2002 when Grace was born, and it still is not included. Anyway, that was a pinacle moment for me as a parent. At that point, we were given an "all clear" based on her newborn screening panel. I hadn't yet heard of Alpha-1 or understood its complexities. I remember sighing a huge sigh of relief at the news of Grace's great results only to have Alpha-1 enter our lives about 1 week later.
Obviously, after the initial shock wore off, I've come to respect Alpha-1 in a lot of ways. No, I wouldn't purposefully ask to have a child with Alpha-1, but I honor its force in our lives. It has provided me with perspective and a healthy amount of remembering to live in the moment.
SO, what the heck is my point here? WELL, I'd like to ask that any parents of children with Alpha-1, share their opinions on newborn screening for Alpha-1. Are you for it? Against it? Please tell me why.
I know a lot of Alpha-1 parents lurk on my blog, and that is okay, but I'd love to hear your thoughts through commenting on this entry or by sending me an email to jenchar [AT] uwalumni [DOT] com.
I'd like to prepare myself for the kinds of questions I may encounter while at the workshop. It will be full of medical professionals who have influence and knowledge of Alpha-1. I hope to encourage them to allow parents to have information that is critical to the upbringing of their children.
Thanks in advance for your thoughts. I'm sorry if I rambled...can ya tell I'm nervous? haha