Do you disclose that you have the Thalassemia Trait?

Hello, I recently married someone that has Thalassemia.  I think it's the minor case, but she's never had it specifically identified.  She did not tell me until after marriage that she carried the gene, even though she herself knew because one of her parents has it, and she herself had a blood test some years earlier and been told by her doctor to be careful. 

I had asked her if she had any health issues in her family before marriage, and she said no.  She said later that he family had told her it was "no big deal."  After reading all about what happens if the spouse has the trait, too, I don't agree.  As someone who doesn't have the trait (tested negative, after being told about her trait), I wonder what most people with Thalassemia Minor do?  I am trying to understand how much families with the trait deal with disclosure to other people?

It's obvious that some people will not respond well when they find out about it  (and I am not sure, to be honest, yet how I feel about), but hiding this from a future spouse seems wrong, because it can be passed to the child.  But I can see why the parents of the Thal Trait child might decide to say nothing.  If I have kids, I would not want to be in those parents' position of deciding whether it was better to hide it, or reveal it.

I don't want to assume why your spouse did not tell you about being a thal minor, but the statement

She said later that he family had told her it was "no big deal."

may reveal all that is needed to know. It sounds like she believed it to be no big deal as she had been told. It is so common, even by medical professionals to understate the importance of this knowledge, that many carriers really do think it's no big deal. As you now realize, it can be a big deal if a carrier has children with another carrier. One of the purposes of this group is to create awareness about thalassemia and the importance of testing a spouse if you know you are a carrier. Many doctors do not present this to carriers and as a result, many thal majors are born to unsuspecting parents. From what your wife said, I would think she was never really informed of the possibilities.

There are reasons people hide their thal status. Some do it because they think it's not important and I wouldn't really call this hiding it. However, in many countries it is considered a stigma to be a carrier and in the past in the Mediterranean region thal minor was called having the stigma. In India, this is also a big problem because minors feel others will not marry them if their status is known. This continues to result in thal majors being born at a rate that is disastrous for many of those involved.

For most thal minors, it isn't a big deal as far as their health, but many minors do have anemia and other related health issues. If your wife has never had any real health issues tied to thal minor, for her it has been nothing to think about and probably has seldom crossed her mind.

I agree with andy. Your wife probably didn't think anything of it...especially of she was told that out was no big deal. My husband and I were dating and tested before getting engaged as his parents told him he had it. I was never told I had it. So when I tested and it came out positive for the gene...I didn't really think of it as a big deal initially. I didn't think that a 25% chance was a big deal and neither did my husband. Really...its hard to base a decision to marry someone based on something like that. We felt that whatever would happen would be. Even now after having two thal major children I don't think I or he would have been able to make a decision like that....back then. Its hard to see how difficult something like this is unless you go through it or u witness someone going through it.

doesn't make her a horrible person. I can pretty much guarantee your wife didn't do it deliberately...I mean after all she would suffer more from it than u if you both had to face something like that...
I mean...it doesn't effect....it would effect your future children which I'm sure she would never want to harm.

I hope you are not holding this against her and I hope you can understand what I'm trying to say. I know this happens in arranged marriages because one little issue a women has can pretty much leave her tainted. its ridiculous   

After reading your post, I do agree with both Cari and Andy.

Before I tell you my side of story, please do not judge your wife by her, with holding the information.  She may not mean it, because to many people, its not a big deal because they do not know the consequences and effect in the marriage.

My husband and I are both Chinese.  Being pale in my early years(till now) did not bother me because nobody told me my family from my mum's side has thalassemia except I knew one of my cousin was pale and needed to take folic acid daily because of his "poor health".  I am still guessing whether my dad has thal till this date because it would matter to my youngest brother.

I knew I was slightly anaemic in a routine blood test but it wasn't a problem to me because I took Hb electropheresis with one of the pathology lab and it rule out I'm "NORMAL", therefore I proceeded with the marriage with my husband assuming life is going to be great!  Only during my pregnancy my hemoglobin(hb) fell, the doctors(I've seen numerous doctors) are running series of test after test, without finding out the reason of my anaemia. The doctors also "assumed" I'm NORMAL, therefore gave me iron pills and inferon injections and transfusion, contributing to my iron overload to these days. 

I only found out the root cause of the problem after the delivery of my first child, that I carry alpha thalassemia, with gene deletions and presumably some mutations(which is not able to confirm to this date).  I was classified from a minor, to a trait and now a HbH because my Hb was never higher than 10 for the past few years.  I am still "looking" at the exact deletions and mutations which my local hospital still failed to find out despite going to the clinic for the past 6 years because what I have is rare hemoglobinopaties. 

I have 2 childrens.  Unfortunately both of them carry the alpha thals but I had no official report of whatsover mutations/deletions they carry except for one. My husband refused to be tested, he assumed he is normal because he is a blood donor.  My mum-in-law at times are "mad" because his son married a thal(I assumed if I knew I have thal, maybe my mum-in-law will oppose to this marriage?) because I passed the genes to my children.  I did not know I have the gene in the first place!

I didn't know that my cousins are thals until I told my mum I am anaemic and she only took the initiative to find out from my aunties after the delivery of my son.  She didn't know she was a thal until I told her she must be the one who carries the gene because her sisters had it!  I told her to talk to my brother who got married last year about thal but she did not, saying what's being done is done.  They are married, do not disrupt people's life.  Since my mum wouldn't discuss, therefore I, on the other hand took the effort to talk to my brother.  I asked whether he has done any blood test.  He said both of them are fine.  I told him that he needs DNA analysis but he heeds me not.  Now I only pray that both of them will bear healthy children. 

Society stigma is still prevalent among Chinese community.  To the older generation, they would not rather, let people know the disease runs in the family, else their children will not be able to find a spouse.  Having carried the gene myself, I do not mind other people know I have thal, even among my friends.  At least, having known that I carry the gene, my next task is to find out what are the mutations/deletions my children carry, to ensure they will find a compatible partner.

It is hard to accept at first but since you have accepted her as your spouse, forgive her, she might not mean it.  She may just be like my mum, having little knowledge of thal, and the thal stigma.  Your next goal is to find out what type of thal you have for your family planning.  This forum is very informative.  You can read up a lot of sharings and learn from each other. Therefore, I wish you all the best.

Thank you for your perspectives.  Gwfan, I am so glad you responded.  My wife and I are also Chinese, but living in another part of the world.  And yes, you are correct, Chinese people generally try to avoid marrying people with genetic illnesses.  It made me wonder if this forces families that are carriers to basically have to conceal their status in order to get married, rather than face potential rejection because of it.  It must be terrible for a parent to have to explain that to their kids.

My family and I have been puzzled and angered because when we try to learn more about my wife's condition, she seems impossibly uninformed.  We get the distinct impression that she and her family are hiding information, and that obviously stems from her not having mentioned Thalassemia in the first place.   She doesn't know what type of disease she has, despite having been diagnosed.  She doesn't know if her siblings have the trait.  She knows that one of her parents and that entire side of the family are carriers of Thalassemia.  But I see that you don't know the status of your siblings, either.

To me, it seems unbelievable that if you have the disease, that you wouldn't try to find out more about it, and if you have family, and particularly if you are a parent, that you don't ensure that your child or relative know that they are at risk, if they marry another carrier.  

I can't understand your siblings who don't want to be tested but still want kids.  The risk is too high. But I think there are a fair number of people who probably don't want to know the truth so they can honestly say that they don't know, and keep hoping that they don't have it.  

I think first, by not telling the truth, and then being found out later, you are seriously undermining the trust in your marriage, possibly damaging it beyond repair because this is a big issue that has huge implications, not small ones.  Not only do you risk a thal major birth, you will miss the opportunity to try new technologies like IVF-PGD, which may allow you to actually end the thal gene line in your family by selecting only thal-free embryos.  If you don't tell anyone about the problem, you won't have that opportunity.

Maybe most important is that it is painful to be the parent of a carrier who may be discriminated against.  Not everyone is up to this job.   When you marry a thal carrier, you are marrying into all these difficult issues.

Incidentally, Gwftan, it sounds like all of your relatives got married in spite of the stigma.  I wonder if they revealed their carrier status to their prospective marriage partners, or if it was something they found out after marriage?

For your information, my parents, uncles and aunties got married before they knew they have thals.  My mum doesn't know she has it, I told her she must have it to be able to passed it on to me.  I only know of 4 cousins, only 1 of them are married.  I have more than dozens of cousins who are not tested and they too get married and have kids.  Its only the recent years when the health ministry in my country make an issue about pre-marital screening to reduce the number of thal majors, that we now know of thalassemia screening and thalassemia incidently.

I don't know whether my cousin reveal her status but she do have 3 lovely childrens, because to many people, they think its no big deal being a minor.  My thal cousins are quite successful despite being thal, they are lawyer, architect and engineer.  One of them even represent the sports club for swimming competition.

I think the question for you now, is not to judge your wife.  Since you have committed into this marriage, and she do tell you she has thal before you have kids.  At least you still get the chance to find out both your status before you actually plan for kids, rather than go ahead with family planning and then she told you after the conception. 

Besides that, I would pose you a question.  If you know your wife have thal, would you... still go ahead and marry her?  This is the most important question, not her concealing her being a thal.  We consider ourselves normal, except we have thal, do normal things like anyone else.  Eventhough I would have more health issues but I believe many of us will agree we still push myself to do things within our limits, to have a career, family and kids.  Its only how you feel and look about it.  Its the matter of you whether you would accept having children with a thal, how much is your love towards your wife and family.  I think that's all that matters now.

Im totally agree with gwftan.

For the context of this discussion, I would like to  present some facts about thalassemia.

There are an estimated 200-400 million thalassemia carriers on earth.
Most carriers are unaware of their status.
Most who are aware of their carrier status are not aware of the implications regarding the possibility of producing a thal major when having children with another carrier and have never been told of the importance of screening any possible mates. Most who do know have been told something like this, "thal minor has no symptoms and is nothing to be concerned about." Seldom do doctors bring up the the need for testing of partners before having children. It is rare when a thal minor fully understands the implications of being a carrier.

This is a quote from the bio of a member who just joined.

(I find most people are unaware or even heard of this disorder).

As administrator of this group, I have read these same words countless times. And one glaring fact being overlooked is that most parents of thal majors who join this group had no idea at all that there was a risk involved when getting pregnant. This is the norm, and creating more awareness is one of the main objectives of this group. but it is a daunting task, because even most of the medical profession is not fully aware of the implications of carrying thalassemia.

Unless one knows 100% that information was intentionally withheld, there is no basis to assume otherwise. Being a practical person first, I have to ask why not just get your wife tested and find out what type of thal she carries? It would be far more productive that speculation and assumption.

Andy, in fact, she is supposed to see a hematologist/genetic counselor soon.  That is the first step.  But our story is actually more complicated than that.  But her reason for not saying anything was that she forgot to tell me that she had this, although she had been diagnosed and informed by a doctor. 
And maybe that is because her parents and doctor did not emphasize that it is important.

Her parents were aware of her condition, too, and they said nothing, despite knowing full well that I was trying to understand their family health history (e.g. do you have a family history of diabetes, etc...) and she knew that health was important to me.  It's not that any medical condition is a problem, it just depends on what it is. Unfortunately, I am only learning about thalassemia now.

I think this board is incredibly useful, though, as my own wife is not communicating with me about this, whether it's because she doesn't want to, or doesn't know enough.  Medical studies don't show what the affected people are really thinking about.  I am grateful for this forum.

First, I just want to say how grateful I am for this site and to all of you who share so openly and honestly. I just some how want to share my thoughts, though the situation is slightly different.  I adopted a little girl from china last year. She was 13 months when we got her and is now 26 months.  She was just diagnosed last month with beta thal intermedia and alpha globin triplication ( I am still unclear of exactly what this means for us).after reading this thread, it got me thinking about how this test should be given in the adoption process. However, I shudder to think that if we had been told, we might have said no ( I honestly don't know ...I'd like to think I am a better person...but I MIGHT have said no). The idea that I would be missing out on all the joy this precious child has brought is terrifying. My husband and two other kids (biological, 16 &14 years old) adore her.
So,  on one hand I feel betrayed. The Chinese government is obviously very aware of this disease and have the ability to do screenings and be more forthcoming with information on these children. On the other hand, I feel so blessed to have her. She is now having access to the best medical care in America, and I am devouring all information so I can be certain her quality of life is the best it can possibly be. What an honor to be involved in so dramatically change this girls life! Also, though we are Americans, we live in china and wouldn't it be great if I could start helping remove the stigma? I have worked in orphan care there 7 years and know a lot of officials and such. Currently I have been working to remove the stigma of adoption, and trying to get locals to adopt.... It is truly all about education as Andy so rightfully states a lot! I for one am very proud parent of a Thal!

I understand this is different, your wife an adult, perhaps made a poor choice in not sharing (or really did just not think it a big deal and truly forgot to mention?) But You loved her enough to marry her for life - for better or worse, in sickness or in health.... Your testing of those vows just  came sooner than most would have expected. I'd also say that your wife is a very lucky woman to have married someone who is quite obviously capable and willing to figure this out and help her to have the best life she can have...and I do pray you work it out and that wonderful life is with you. Maybe This is part of Gods plan?

Hi,

I can understand where you are coming from,but believe me thal minor is no death sentence,the more you'll educate yourself the more you'll see that as Andy said majority of the carriers don't even know about their carrier state and even if they do know they son't think "its a big deal" ,me and my husband never knew we had it until our first daughter was born,you know now,and you are not the carrier either,that matters a lot,your kids can never have thal major,yeah they can have thal minor,but with the technoloy and medication now a days,even thal major is manageable,trust her when she says she was told it was no big deal,coz not every one is as aware or cautious about health issues as you are,its a good thing that she has you,you can help her with it and even your relation ship can grow stronger,as they say what doesn't kill you makes you stronger good luck .

It is better to disclose, consult with docs and take precautions. Again it is a social problem...