Wow. I didn't realize that this had even been posted! It's been a while since I've been on the site ... I apologize for the late reply (2 years late!). Sydneygirl, that is so nice of you to think of me enough to wonder how I have been doing! It meant so much to me when I read your post. I have been ok, thanks ... I hope you are doing well too! The reason I came back on this site was because I was doing some research again to see if there have been any recent breakthroughs for thalassemia in the literature. Unfortunately, I did not find any new information (other than the T2*, which most people here already know about). I did happen to find a study on the gene that causes thalassemia though (by googling breakthrough in thalassemia) ... which happens to be conducted and authored by my pediatric hematologist who followed me throughout my childhood! It was great to see that she is still doing research in this area, and at the top of the field at that!
Anyhow, I just wanted to say thank you, and apologize for not updating you about my status sooner. Hope everyone here is doing well
dlevy