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Author Topic: Thalassemia related tests  (Read 10333 times)
uditsud
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« on: June 10, 2007, 03:06:39 PM »

Hi everyone,

I am in deep trouble and need advice/help from you. I am about to get married and my parents want me and my girlfriend to get tested for Thalassemia before the marriage. However, my girlfriend is not ready for the tests and believes that we should not think about all this before we plan to have a baby. But my parents insist to have the tests done asap. I just started reading stuff related to Thalassemia and don't know much about it. Is it necessary for both the parents to be infected with Thalassemia minor/major for the child to inherit the disease? Is it possible for me to get myself tested and be sure that there won't be any problems if I don't suffer with any of the Thalassemia related problems.

I am unable to convince either my parents or my girlfriend to go according to the other. Please suggest if you see a solution to this. you can mail me at uditsud@yahoo.com

Thanks,
Udit Sud.

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Manal
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« Reply #1 on: June 10, 2007, 05:34:34 PM »

Hi uditsud

Welcome to the site and hope that you would get all the help you wish for.

First, i would like to greet your parents for insisting that you and your girlfriend get tested because not all people think that way or in other words are aware of the importance of such procedure. The majority of thalassemics are a result of the unawareness because almost all the parents heard of thal when their children were first diagnoised and believe me at that time you regret million times that you didn't do these tests. Because your girlfriend is not a mother yet she may underestimate this procedure -- as i used to-- , but let her read some posts in this site and she will understand how it feels for a parent to know that their child is not well or in pain or different from other children.

There are lot of genetic diseases other than thal, so why not do these tests to avoid them. Tell her that it won't harm and on the contrary they would clear things up. I think that she will understand if you start together to read about this subject and how you can avoid many hardships with just some tests. If she is still not convienced,what i advice you is that you do the tests for thal and HB disorders through a DNA test and if you are fine and don't carry the trait so this means that your children will be free of the disease even if she is a carrier. This is for thal as you can not have a major child unless both parents are carriers. But for any other diseases, i don't know as you have to check with a genetic councellor.

Please uditsud, understand that you are given a chance that most of us wish they had so don't lose it
Hope you the best

Manal
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Andy Battaglia
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« Reply #2 on: June 10, 2007, 06:07:56 PM »

Hi Udit,

Both parents do need to carry the thal trait to have a thal major child. If you are tested and don't carry the trait, your children can't be majors. However, you and your future wife both need to be tested so you know whether or not your children will be potential carriers of thalassemia. If you have a child in the US, it is most likely that the child will be tested at birth since 42 states in the US make testing at birth mandatory. The test is a simple blood test so I don't understand why your fiance isn't "ready".

As Manal has said, you have a great luxury in knowing you should be tested as this group is full of parents who wished they understood the importance of testing before conceiving children. The trepidation about being tested that your fiance currently has would pale in comparison to the feelings she would have should she bring a thal major child into the world. The realization that it could have been prevented if they had known is a stark reality that every parent of a thal carries with them every day of their lives, and to know that a simple blood test could've prevented it, is devastating to most parents.

Get tested and plead with your future wife to also be tested. Your parents are so right. Listen to them.
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uditsud
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« Reply #3 on: June 10, 2007, 08:24:37 PM »

Thanks Manal and Andy. Your answers were a great help. I have been reading about Thalassemia since morning and really wanted someone to answer my queries before I go back and approach my parents or my girlfriend. I also read the other posts in the website and understand the vexation and the concern towards thalassemia. I will be going for my tests as soon as possible and hope not to carry the trait. So that it does not become that important for my girlfriend to get the tests done before the marriage. I will update the post after I get my results because I would again need your help just in case I turn out to be a minor carrier. In that case I would need to know one more thing: What can be done if both of us are Thal carriers?
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Kathy11
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« Reply #4 on: June 10, 2007, 10:58:07 PM »

Hi uditsud .
welcome to the site,
I'm a parent and i would never tell my adult sons what to do ,I love them dearly and i support there decission. i am around for support and encouragement,assistance when required by them
I think that the decission for blood test incase there is a blood disorder has to be between you and you spouse to be.
your girlfriend might be rebelling from your interferring parents.
you and her alone need to know what to do are thal cariers, no one can advice you on this matter ,If a person has love for another they always seems to find a way through there worries.
goodluck in whatever you decide.
Kathy


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Manal
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« Reply #5 on: June 11, 2007, 07:51:23 PM »

Hi Kathy

You addressed this issue from a totally different point of view which i like sooo much. You made me realize how much parents are part of the deceision in our culture. It is really nice to know the difference between cultures

Manal
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Kathy11
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« Reply #6 on: June 11, 2007, 10:37:16 PM »

Hi Manal,
life teaches us all kind of lessons, we all learn from one another it is good to view different aspect of a discussion.
We also need to move on with the time or else we will stay behind and always be in the dark.
Its  good to have choices and to feel free to exercise them when its necessary.

I hope you and your family are ok.Take care
Love Kathy

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Sharmin
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« Reply #7 on: June 12, 2007, 09:58:25 AM »

Uditsud,

I hope that you and your fiance are not both carriers.  It will make your life much easier.  My husband and I were both tested before we got married - the test confirmed that we were both carriers.  We then had a doctor falsly reassure us that nothing bad would ever happen. 

In my personal opinion, if two people want to spend the rest of their lives together this should not deter them.  Instead, I think that the couple should enter the relationship knowing that they may need to use alternative methods to have healthy children.  Preimplantation diagnosis and IVF can help you have healthy children because having a child with thal major is 25%.  We have one child with thal major and one child with neither gene for thal-so she is comletely normal.  I do wish at times that I had known about these options before having my children.  I hope you will begin your life with this knowedge under your belt. 

Ignoring the possiblity that you may have these issues will not help.  Equip yourself with knowledge and information.

Sharmin
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Sharmin
Christine Mary
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« Reply #8 on: June 17, 2007, 02:03:27 PM »

hi to all...

here's my point of view... Being a mom of a thal Major child, and KNOWINGLY got pregnant was not the "brightest" idea in the world,(for lauryns sake), but DAMNIT, i wouldnt trade her in for the world!!! This is apart of who she is. She made ME A BETTER PERSON BECAUSE OF IT>>
Yes, the shock of her diagnosis devestated my husband and I. (Who thinks anything bad will ever happen to them?)
we were tested before marriage, we knew our odds, and I might be the only person on this forum that planned a so-called thal child.

Can i ask ??!!!

why do people applaud those who willingly adopt a thal child, but birth parents are forever scorned knowing they were at risk and planned a pregnancy, and the baby had thal?

Im just venting. I take great pride knowing my child will be cared for with the advances they are making today regarding thal.

Sometimes BASICALLY ALL THE TIME  I forget she has thal major, and I just ENJOY Her. Playing dancing smiling, etc. She will live a near normal life, and this is not a death sentence these days.
we all have a right to our own opinions BUT,
Reading the posts about how horrible and ungodly it is to have a planned pregnancy when you can potentially have a thal gets me so mad. you are talking about me.
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Lauryn's Mom
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« Reply #9 on: June 18, 2007, 01:39:20 AM »

Hi Chiristine,

I think the main key is "Prevention" for defeating Thal. once and for all from this world. This is the reason why couples are advised to abort so that Thal. can be "prevented" to propagate in future generations via that child while they can get another one with no Thal. I know this is very brute but many people can't afford IVF.

However, once a Thal. child has been born, then all the focus is on the welfare of the child. So, if there is an orphan Thal. then he is highly encouraged to be adopted as it is better in his interest to be with a caring family than an orphanage.

I just wish that the "perfect cure" be discovered soon so that it solves this dreaded aborting issue once and for all.

Take care, Peace!
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Christine Mary
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« Reply #10 on: June 18, 2007, 07:30:02 AM »

thank you for your reply sajid.

 

you made a great point. i shouldnt take things so personally.

i know you guys luv little lauryn and you helped me so much in the beginning WITHOUT pointing fingers.

I honestly dont know where that all came from.?
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Lauryn's Mom
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« Reply #11 on: June 18, 2007, 11:48:09 PM »

Hi Christine,

No one ever pointed to you. The issue of deciding what to do when a fetus is diagnosed Thal. has been in debate since the beginning; and when it is discussed, it is discussed generally; and no one blames anyone for following a particular school of thought as they have valid points of their own.

Take care, Peace!
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