HLA Testing

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Offline Andy Battaglia

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  • Will thal rule you or will you rule thal?
Re: HLA Testing
« Reply #15 on: December 29, 2011, 03:18:36 AM »
Pmeet, because transfusions introduce new antigens into the body, it is recommended to do BMT as early as possible to minimize the amount of foreign antigens present, which create antibody reactions to the transfused blood. Of course, if a match is not yet found, patience is required and proper treatment, including chelation is necessary to maintain the health of the patient prior to the BMT.

And a comment on abortion and thalassemia. I have no interest in reviving the moral discussions involved. My own opinion is that this is a decision that should always be left to the parents and we should never make any judgments on the choices of others. This opinion was shared by Lisa Cammilleri, and the respect for parents and their privacy will always be held with utmost regard at thalpal. With that said, I am not completely informed about official views towards abortion in India, but I do know it is legal there and I also know that many parents in India and other nearby nations often choose abortion once they learn the fetus is a thal major. Many of these parents already have at least one thal major child and feel that they cannot handle the burden and do not want to inflict thalassemia on their children. I realize that for many, there is a great moral and ethical problem, but I do hope we can all realize that we can never walk in the shoes of the parents making these decisions and should never assume that we can ever be in position to judge. Being a thal major isn't easy even when the best treatment is available and for much of the world, proper treatment is only something that can be read about. If parents trying for an HLA match discover the fetus to be thal major and choose to abort, I feel the only message that should be given is we're sorry and please persevere.

All we are saying is give thals a chance.

Re: HLA Testing
« Reply #16 on: December 31, 2011, 01:00:04 AM »
I think it's also important to realize that our posts on this site are public. (Meaning, while I must log in to post a message, I can view the existing messages without logging in - as a guest.) Most of us share things that are specific enough that others could figure out who we are. I assume most of our children will one day be members of this group.  Things posted here could potentially be read by our children one day.

From a parenting perspective, it is likely a very difficult situation to find oneself in to one day have to explain to one's child who has beta thal major that a choice to abort a 2nd beta thal major fetus was made...I am thinking of the implied messages that could send to one's existing child that could be quite difficult for a child to comprehend and deal with self-esteem wise (ie. burden, what might my parents have done if they had known I would be born with beta thal major, etc.).

I come from a very different experience - having chosen to adopt a son with beta thal major, and now choosing to adopt a 2nd child with this same condition, in addition to having a child who does not have thalassemia. I am not trying to pass judgement on anyone. I just wanted to mention that these messages are accessible by the public (meaning they don't need to register and log in to see them) and our own children one day will likely join this group for support and would be able to see our past messages....

My son, adopted from China at age 3 in April 2010, has beta thalassemia major.


Offline joyce

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  • with my baby jovy..
Re: HLA Testing
« Reply #17 on: December 31, 2011, 04:50:35 AM »

Im planning of having my 3rd this year and you know what- I do it because i want to find a match to my thal major, Joey and Jovy ( sound rude?). They are both thalasemia Major. I don't care what will people says about it as I don't expect people to understand  how's life with them.
Only us know what does it feel of having such a special kids as they are.

Stand still and be brave!


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