I carry alpha Thal trait, found that my gf having Thal minor too!

Hi all,
I am Loy, a brand new member from Malaysia, just joined today and found this site is really useful to me and all with thals..... i hardly can get any constructive advices from my friends as none of them are thals... Need your advices..... pls guys...

I have been with current gf for 4 years plus, during our 3rd year together, only I found that both of us also having thals minor treats... then i started to xplore all kinds of thals info... but as more info i got, more worrying i am... initially this news caused me to think whether i shud have broken up with my gf prior to marry, as we love children, but we cant take the risk for that.. 25%... its pretty high and odds is really nothings if we really fall into it... But after months consideration, i still decide to continue with her because we know that we love each other.. really do.. but question comes in, whats the best way for us to get a baby?

PGD, IVF only comes with very very low success rate, and the cost is just too expensive.. close to RM20k per cycle with no gurantee in malaysia, and it really takes time..... patience.... suffering process...... any advices from experienced ppl? plss...

Pre-natal test, but if found that the baby comes with major, what to do?? abortion? then how many kids am i going to kill? I cant do that..........!!!!!!

What is the best choice for me? i dont know...!!! anyone can help me to decide?

Andy, in your previous post, u did state that if i am an alpha treat and my partner is beta, then the chance of getting major kid will be lesser rite? hows that count? can you explain more? anyway, i am going to bring my gf to go for complete blood check soon.

Guys, pls give me some inputs......


dilema
Loy

Hi Loy,

Do you know which trait you both are? That would make advising much easier. Alpha and beta minors cannot produce a thal major, unless one of them carries both genes.

I am having alpha traits, but my gf still dont know yet which traits she has, i will take her to have a check this week. But somehow, what do you mean by 1 ppl can carry both genes?

Sometimes people carry both alpha and beta thal genes. This can be detected through testing. If your gf does not carry alpha thal and you are certain you do not also carry beta thal, then you cannot have a thal major child. It would be impossible.

How do you know you are Alpha Thal Trait? Did you get genetic testing done for yourself? To diagonise Alpha Thal - it is very dificult and mostly done by exclusion of diagonosis (ruling out Beta Thal) or DNA testing.

To be more clear.

If you are Alpha Thal Trait (and not Beta Thal Trait) and your gf is Beta Thal Trait (and NOT Alpha Thal Trait) - you guys will NOT have Thal Major child.
If you have Alpha Thal Trait and some Beta Thal Trait and your gf is Beta Thal Trait - there are chances of Thal Major or Intermedia child.
If you have Alpha Thal Trait and your gf is also Alpha Thal Trait - you would need to get genetic counselling. There are high chances of a Alpha Thal Major child which also poses a risk to the mother when she is pregnant with an Alpha Thal child.

I had gone thru the thalassaemia screen in 2009 with the findings is "suggestive of Alpha thalassaemia trait"

Sad to know that my gf's papa is having alpha thalassaemia trait as well. Thus i believe my gf would be the same... and it common that Malaysian having alpha thal gene in stead of beta.

what kind of genetic counseling i need to go thru? Now, the only thing i know is, regardless whatever counselling, it cant change the fact that i got to meet a very very big challenge in my life... I still have to face it no matter what....  i am terrily frustruated and sad now!!!

If possible, you should both have a DNA analysis to find how many alpha genes are affected in each. From this you will learn if there is any danger of conceiving an alpha thal major. Please note that this is a fatal condition and should be avoided entirely, so please do not take any chances until you learn the status of both prospective parents. Don't be afraid to get the test. It can also find that you are simple one gene carriers and that would pose no danger to your child, but you must find out.

what kind of genetic counseling i need to go thru?

Not sure if there is facility in Malaysia but genetic counselor can help with decision on what are the risks for Thal carriers.

I would say the first step is the DNA testing of both of you to confirm what genes are affected to move any further.

Thanks guys. I will proceed for the DNA test with my gf in this week or next.

Guess the next thing i have to worry will be the financial issue. Understand that some other countries did help for that, but i tried google search those in malaysia, it was like None found. You guys know any source or some sort like foundation which can help my case? appreciate it very very much...

Hi Loy,

I'm new to this forum but I'm from Sabah, Malaysia.  I'm wondering whether you've done the DNA testing.  I think if you need counselling, maybe the hematologist would be able to advice you as I don't think in Malaysia we can find many people who are qualified to do genetic counselling unless you would like to travel to Singapore, they have better medical facilities but it will cost you a fortune.  On second account, if you get yourself admitted to the government specialist clinics, the cost for DNA analysis is somewhat "free" or fully funded from the government.  I only pay RM5 everytime I go for the thal clinic which gives me blood test and free folic acid everytime.

I've Alpha Thalassemia too, but the more complex type with Codon 59 mutation.  In fact I've run around for looking for answers to my anemia without finding out I'm actually alpha thal because I did a HB Electrophoresis with Pathlab which suggests I had no thal.  This is what brought to my conclusion, I'm otherwise, a healthy adult and married my husband. 

Only on my 1st pregnancy I found I had problems with my low HB which lead to more and more blood test to come out with the conclusion, my gynae don't know what's wrong with me sent me to another consultant for more test; government polyclinic without doing any testing insructed me to take more and more iron resulting in my iron overload,  lastly my GP sent me to the government specialist clinic after my delivery, thinking I may get answers to my problem with the conventional bone marrow testing because he's otherwise baffled what's wrong and its beyond his expertise ...

On admission to the thal clinic, it went on quite smooth sailing although I get a bit upset at times, with the doctors(very junior doctors telling me I'm fine, the pains, etc are "normal".. Otherwise, its a good source to find out your what type specifically is your alpha, and I would add on..When I was pregnant with my 2nd child, I'll directly get myself referred to the OBS clinic where they will keep watch of your HB religiously till you deliver on top of the normal thal clinic appointments.

As a conclusion, its important to know what type of alpha trait you have for your future planning.  For me, I only get to know it too late but its not all lost.  Both my children gets their DNA testing done gy government hospital(sent to IMR), at least I know they carry my bad gene but it will help them to plan for the future.

thanks....

the problem i have now is, both me and my gf are having Alpha Traits... so we are inside the category where 25% will be having the chance of getting thal major. From your words, looks like your children are both healthy with thal minor. does your husband have thal traits as well?

Is it every govern hospital provide"free" Thal or DNA testing? if yes, i gonna rush back to malaysia to do it soonest...


thanks, loy

Hi Loy,

Hm... your question is a bit tricky here.

I think I need to rephrase what I say.  Not government hospital, its the specialist clinic attached to the government hospital.  I think only big hospitals in the big city, like mine, KK have it.  Ya, govt clinic provide "free DNA testing" but provided you are referred into the govt specialist clinic like my case.  1st vist I think I pay something like RM35 and subsequent reviews RM5.  I know health ministry publicise a lot of thal screening but I think they generally order HB electrophoresis test if you go to government polyclinic, which takes at least 6 months(which is a myth... I never got my result test... I think they lost it in the post???)

For more specific testing, the government hospitals don't do the analysis.  The hematologist have to specifically "order" the test especially for people with alpha thal we can't get the result through the normal HB electrophoresis.  When they order it, you need to provide your blood sample taken and they will courier it to IMR(Institute of Medical Research, I don't know whereabout in West Malaysia).  I don't get a copy of the test(unfortunately) but good enough for the doctor to tell you your "problem".  Even for my hematologist, she's merely "guessing" I have 1 gene deletion in 2006 and only in 2008 I know which gene deletion through my daughter's DNA analysis (as she an was given a follow up to the pedeatric clinic to test for her DNA analysis, straight after deliver courtesy of hospital, because of my "high risk?") to order for another DNA test for her elder brother.

Ya, my children are born healthy but jaundiced after birth but they had other "complications" too.  My eldest during pregnancy gynae scan found out he has a shorter limb, which caused us to be ultimately worried he will be a "dwarf".   Thank goodness, he's not!  My younger daughter had her 13 tooth extracted under GA(her case high risk as well because of thal, they will not perform any operation if her blood test shows any irregularity) and she's only 4!

My only 2 cents of word, government took extra care for people with thal because its a nationwide problem.  The best if you want DNA analysis, is to get yourself referred to the government specialist clinic by a local GP.  You can try wade your way through polyclinics for referral, doubtful the doctors there know half the stuff, that's where I get the extra special iron and injections giving me iron overload till now , might as well pay a bit more to visit local GP!  My last visit to visit to polyclinic recently, took me only 5 minutes to rule I have gout when i complained persisstent  shoulder pain and my uric acid still on normal range(high).  I was seen in 5 minutes!  The doc didn't even touch me to check my shoulder!  If I'm still working now I wouldn't have visited the government clinics.

Sad to know your case..........

erm... my problem is, now i m thinking of marriage, go or not go. Guess i have to pay a visit to KL polyclinic, then ask them to refer me to any govern hospital which has such test... I m ok to pay for such test as long as it can give me an answer........

thanks for all your advice.......... anyway, enjoy your life!!!

Dear Loy,

Good luck to you.  I hope that your tests will be ok, if not you will need to discuss with your gf your options.

If it was the olden days, who would know about thalassemias?  They feel its right to get married and go ahead.  But newer generation, we're responsible to our children so it invovled a lot of planning and commitment.

Anway, good luck to you  all the same.

Loy,

because there are 4 alpha genes, the possible genetic outcome of children depends on whether it is silent one gene carrier or two gene trait and also where the deletions occur. Only DNA testing can answer this. You should definitely be tested before you make any decisions concerning your future. For example, if both parents are one gene silent carriers, there is no possibility of alpha major.