How can I tell to my boyfriend future husband about beta thal minor?

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People that don't have information about thalassemia, when they first hear about it, think of it as a malignant illness.....I am afraid that one day, when I'll have a boyfriend and I'll explain him my "illness" how will he react? Sometimes even if you explain that there is no problem with you or that your baby wont have any problem as long as you are the only one having beta thal minor they still think something bad will happen to the baby....how would you act in such a case? how would you tell to your partner?

PS: Sorry for my english

Re: How can I tell to my boyfriend future husband about beta thal minor?
« Reply #1 on: January 02, 2012, 02:43:41 PM »
Is there any other way than to just to tell him and let him make an informed decision about it?
As someone who was told about this after marriage, I think it was unfair for my wife to have withheld this information.  I don't know what decision I would have made, but I know that I would want to know what the implications of having a child who carries the gene is.  I can see that it may be difficult for a parent of a carrier to deal with the potential pain the children will experience at learning about their condition, and of dealing with other people, particularly when it comes to their future marriage.  Some people would not want to be in that situation.

Your boyfriend and his family will have to share with the problems that you and your own family have been dealing with, if you get married.  It would be unfair to put him in that position without telling him, first.

Re: How can I tell to my boyfriend future husband about beta thal minor?
« Reply #2 on: January 04, 2012, 12:44:12 AM »
I would say when you find the "right" guy, just give him the facts - you carry the trait for a genetic condition that impacts the bone marrow's ability to make healthy red blood cells. That there are many different mutations of these genes. You would want him to get a genetic test to make sure that he does not carry the exact same trait that you carry (meaning if you are beta, you want to make sure he is not beta; if you are alpha, want to make sure he's not alpha). Let him know that when two people have the same trait, there is a 1 and 4 chance of having a baby with a major/transfusion dependent form of the condition.
And let him know MANY people have the trait and do not even know it.
It would be hard to talk about what if's without knowing if he carries the trait or not.
Nicole
Nicoler

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

Re: How can I tell to my boyfriend future husband about beta thal minor?
« Reply #3 on: January 07, 2012, 04:01:40 AM »
Apologies for the length of this reply... but I thought the article was very relevant.

http://www.nridivorce.com/NRID69.htm

Article: Don’t ask; wont’ tell


Trust: The essential ingredient in a marriage.

Even in the newly liberalised India, most marriages tend to be arranged by families, either through a marriage broker, a newspaper classified advertisement, a web-based marriage portal or the long-established oral tradition: word-of-mouth. One would therefore expect that the rigorous screening process that takes place would result, particularly when endorsed by the family astrologer, in a reasonably compatible couple who have all the potential ingredients for a long and satisfying marriage.



However, as any family court regular will tell you, the number of arranged marriages that break down within two to three months of the wedding is alarmingly on the increase. The reasons for these are many and include sexual as well as emotional adjustment issues, but one reason that keeps cropping up with astonishing regularity is, I feel, an eminently preventable problem: premarital non-disclosure. To get a sense of what I mean by this term, take a look at these three randomly selected marriage scenarios…


Typical scenarios
A 22-year-old graphic designer by training but a homemaker by choice, is told that the bridegroom identified for her in Australia is a chartered accountant working in a large international bank. Two months after living in Australia with him, in a chance conversation with her neighbour, she comes to know that her husband, has actually never been to college, and works in this large international bank as a teller.


After two reasonably happy years of marriage, an engineer prepares to take his wife to Muscat. When he takes her passport to apply for a visa, he realises that she is eleven months older than he is. Both are aghast. He, because this was not what her father had told him at the time of the alliance. She, because she thought he was aware of it and was liberal enough in his thinking not to mind.


Three months after the wedding, when they are investigating the cause of her husband’s erectile dysfunction, a young stewardess learns from his doctor that her husband’s anti-epileptic medication could be the cause of the problem, but under no circumstances is he to stop the medication, for he had his last fit as recently as eight months ago. She is shocked, for, this is the first time she is hearing of his epilepsy.


This is what I mean by premarital non-disclosure. Some facts are actively suppressed (“this matter should never be revealed under any circumstance”), some not made explicit (“but you never asked!”) and some just “hinted” at, before the wedding takes place. How the “deceived partner” reacts when matters come out into the open, as they inevitably will (how long can you keep information about things like your job, your age or a major illness under wraps?), cannot really be predicted.



Of course, it is unreasonable to expect disclosures on everything under the sun, for, many facts are completely irrelevant to the present and the future, but some of the things that families suppress are quite extraordinary: that one of the partners is previously divorced, that one of the parents practises a different religion, that the person has not got a masters degree from the U.S. even though the profile on the matrimonial portal said otherwise, that one of the partners is dependent on alcohol and/or marijuana (not just a recreational user), that one of the partners suffers from a rare genetic disorder that obviates the possibility of having children, and so on. And when the truth finally comes out, further creative mendacity attempts to locate the problem as post-marital (or at least not known to anyone before the wedding) and the quagmire just becomes deeper and deeper. And the marriage is driven squarely on the rocks.


Loss of trust
Every time I speak to the non-disclosing family and ask them why they did what they did, they are invariably filled with remorse. They tell me that the primary reason for non-disclosure was the fear that the truth might mean the loss of a perfectly good alliance. What they never contemplated was that the truth would come out at some time or the other, and when it did, however long the couple had been married, however strong the bond they had developed during this period, the “non-disclosing” partner would come under severe pressure, and experience indescribable humiliation. Even if such a partner were not aware of, nor party to, the non-disclosure, they are not believed by their partners. The essential trust in the partner and the marriage is lost and if the “deceived” partner does decide to stay in the marriage, a long and painful process of re-building trust has to be gone through. Also, the balance of power in the marriage tilts and the “non-disclosing” partner is expected to shoulder the primary burden of this re-building process.


Full disclosure
Frankly, the best way to deal with this is prevention: making sure that no relevant fact is kept away from the partner before the commitment is made. To do this, one first needs to deal with the popular feeling in middle class India that “marrying off the children” is the parents’ primary responsibility and that this has to be done at any cost. If one of the children seems to be a little “less appealing in the marriage market” and is therefore unable to land a partner easily, padding the résumé or glossing over critical facts or stout denial, can never be the recommended courses of action, for, although they may ensure that a wedding does indeed take place, they, more often than not, also result in mortification and visits to the Family Court.



Marriage is not the only guarantee to life-long happiness. Urban India has enough content single people as role models to testify to this. The price for non-disclosure is simply too high and investing in career pursuits may be the better option if a partner is not to be found.


There are, of course, no formulae to decide what precisely needs to be disclosed. As a rule of thumb, anything major that will have some form of impact on your partner’s perception of or comfort with you, is better shared. There’s no need to overdo it either. Your partner does not need to know that you had chicken pox when you were nine and measles when you were six. However, if you had mumps in childhood, as a result of which you’ve become sterile, you might be well advised to consider telling your prospective partner about it, because this has a direct bearing on the future of the marriage, in terms of child-bearing. When you do disclose, the risk you run is that a potentially “good” alliance may be nipped in the bud. However, if you are making a decision that is meant to last you a lifetime, you need to know all the facts before doing so. So does your prospective partner.


A word to the “deceived partner”: Try not to be too harsh when you come across a non-disclosure of this sort. I do agree that it can rock your trust in your partner, but try and understand that it took place in a certain context. Because you were considered a good alliance, your partner’s family probably did some window-dressing, which they, in hindsight, perhaps should not have done. If you find that in other ways, your partner is reasonably good for you, try and practise some forgiveness, and you could still end up having the long and stable marriage that you sought when you said “yes”.


Author: VIJAY NAGASWAMI. Originally Published in The Hindu. The writer is a psychiatrist, columnist and author. His latest book, ‘The 24x7 Marriage’, is due out in late 2008. He can be contacted at vijay.nagaswami@gmail.com

 

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