Hi Victoria,
I read your posts and I really want to comment about the stigma here. I don't know whether stigma would refer to the whole Asian communities here. The stigma we meant here is because culturally we're not so "open" so normally we don't disclose many things even among family members. We don't go round and tell others we are thals. We only disclose when we choose to and wanted to share. Although being thalassemic is not to many people a disease such as HIV etc but to some people, they still shun away if they know their partner has this disease because Asian culture still respect a lot of parental decisions, such as marriage. Such issue that would affect and carry into generations to come.
We are lucky because nowadays, with the power of internet, we learn more. Therefore we, new generation Asians are much educated and much more open, therefore you would hear some of us speak out.
In fact I would like to clarify something. Having to find out that we are thalassemic is not something we routinely do in Asia, or even in my own country. We only knew there are problem, when we fail to find out why we are so anaemic, have medical issues, etc. Therefore it cannot represent the whole Asian population, why we do not disclose our thal, whether we are a silent carrier, trait, intermedia or major because most of the people in the population do not know they are thals. We do not know until there is a problem that seeks doctors to find out, through every means.
Even though after we found out, most of the doctors would still routinely thinks having hb 8-10 is still fine. Iron overload, still within range, is fine. Everything is ok..... no problem, only make sure when we find a life partner, make sure genetic screening is done. Although, to me I felt a lot of frustration, on every visit, on managing life with low hb and other health problems.
However, still, many of us missed the pre-marriage health check(if they care to do it) because people with Alpha thal(like me) is impossible to find out that we carry the gene through normal screening. I believe there are a lot of alpha thals out there but we do not know we carry this gene. Why? This is because, if we have 1, 2 or 3 gene deletion, we still survive into adulthood, and grow old(not to say that we do not have health problem in our aging lives). Only those who are with 4 gene deletion will die in utero, which might then prompt doctors to find out why. I wouldn't know I'm alpha thal, if I don't insist I find it out why I am anaemic by keep on pursuing on this subject although it takes a lot of money and time.
I wished there are more promotions to be done in it. However, I think it would depend on the organisations and the countries to do it themselves. If the countries themselves think that this is a minor problem, therefore, they would not do a massive promotion on it, because they would use up their budget in other things. This website is a good place for resources but to run a massive promotion, needs a lot of money. I personally thinks the the associations must be more pro-active, and secondly the best thing is to have the country themselves take the lead and initiatives. After all, its their people they need to support and care.