When/How do you all tell your partners?

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When/How do you all tell your partners?
« on: March 22, 2013, 03:02:07 PM »
Seeing as how there's a chance that the condition may be passed onto the next generation, when do you guys think is the best time to tell our partner's about the condition?

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Offline Cari

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Re: When/How do you all tell your partners?
« Reply #1 on: March 23, 2013, 04:05:12 AM »
Probably a good idea to explain early on if u r comfortable. However, If it's minor u have I feel like it wont make a difference unless u are able to easily walk away from a  relationship. You see, it's hard for even the most educatedand practical of people to make decisions about their future without really seeing and understanding the true implications of thalassemia major. We checked prior to getting engaged but we were dating for quite a while and by then we just saw LOVE and nothing else.  The thought of not getting married was out of the question. also thought that because we had never really SEEN it happen to anyone, it probably wasn't going to happen to us. I mean, the odds are actually in our favor in a case with two minors (75% chance it would be negative.)

I think of this often because my kids will HAVE to reveal their condition early on since their odds will be higher. 

 




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Offline gwftan

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Re: When/How do you all tell your partners?
« Reply #2 on: March 23, 2013, 04:28:11 AM »
Hi...

 This is the most difficult question, to tell or not to tell.  I believe once you are serious about the relationship, you should tell your partner.  Get him to get tested as well, then sit down to discuss.  Its better for you to let him know, afterall if its just a minor, most people would accept it but if both are you are not compatible, i mean if your risk of having a major is high then you must decide what options are available.  You will not want pointing fingers later if he found out you know and you just keep quiet about it.


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Offline Rashmi

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Re: When/How do you all tell your partners?
« Reply #3 on: May 24, 2013, 05:39:54 AM »
Hello,

Don't hide anything from your partner. Relationships are built on strong bond of love, trust and understanding. Your partner must accept you the way you are. And that way you can take the best decisions, plan your future accordingly and take the necessary precautionary steps not to pass it on to your children.

How you tell him/her, that you have to decide. Always remember, our thal status is not self created. So we must accept, free ourselves of any burden of guilt and move ahead with pride.
« Last Edit: May 24, 2013, 05:46:48 AM by Rashmi »
Rashmi


Keep calm and face.

Re: When/How do you all tell your partners?
« Reply #4 on: May 24, 2013, 01:40:23 PM »
Hi
I also think in one on the first few conversations the topic should be opened. Mostly people are unaware of what it is.. So it needs to be explained & the magnitude of it, if both parters are minors.
This is my experience.. I hold my husband in the first few conversations but he didn't get the magnitude & didn't get tested dispite me repeatedly telling him. He thought he didn't have. 
I just found my first 2 have minor & my 3rd major!
The cards should always be put on the table & then options discussed.
Good luck!

Re: When/How do you all tell your partners?
« Reply #5 on: February 22, 2016, 10:04:17 AM »
This is a really great question as it has lots of implications for our futures and that of our offspring.  There are so many variables that impact when and how we tell our partners such as the length of the relationship, the depth of the relationship, our communication skills, our awareness, understanding of and attitude towards thalassemia and its  implications, our personalities  etc. In some cultures and societies there is a lot of stigma associated with thalassemia and people prefer not to talk about it.

If the relationship is brand new it is not always easy to go on a date and say "Hi my name is X and I am a thal".  Mind you it can be a very educational opportunity for a prospective partner.

In my case, I only recently confirmed via DNA analysis that I have an alpha thalassemia point mutation (thal minor). Long story!  However I always suspected I was thalassemic and assumed I was even though the full evidence was not there at the time. It was both my gut feel as well as my risk management strategy!  This is in fact a problem because lots of people could be carriers and not know it - especially silent carriers of alpha thal.

My attitude towards my "thalassemic status" was to be open about as I felt that the person I was meant to be with would accept me for all of me, including my thalassemic genes.  So when I started dating my now husband many years ago, I told him very early on in our relationship. He was great, very proactive, went and got tested.  In hindsight he should have done a DNA test to gauge whether he was a silent carrier but DNA sequencing tests were not readily available 16 yrs ago here in Australia.  Based on his FBC and other blood work he was not thal however but prior to being tested he said either way we would work through any issues that would arise; this in fact helped cement my relationship with him and set the foundation for working through other trials and tribulations we have been through since then. 

 Since then we have had a couple of miscarriages and a healthy girl, who is our joy.  I had a hard time coping with the miscarriages so it was interesting to read the comments on this site about thals and miscarriages.  I may need to explore this further to get complete closure over these losses as I had no identifiable reason for why I lost two babies in my first trimester. 

Back to your question, the way I see it is that amongst the many conditions that people may have, thal is one of the few that is now more easily identified using genetic testing; even in the carrier state, despite all the mutations that are being discovered all the time. I think it would be fair to say that many other conditions have yet to be genetically mapped and properly understood. In fact we can all be carrying latent genetic conditions that we are oblivious to; that may only express themselves under certain conditions. 

My motto is that "we are more than the sum of our genes" and transparency and awareness about topics such as thalassemia are very important public health issues that should be discussed.  Furthermore apart from prospective partners whom else should we discuss this with? Today I told my child's physical education teacher about my child being a likely thalassemic carrier and the impact this may have on her at sport. She was struggling when doign her cross country at school and the teacher was pushing her which created unnecessary stress for us both. So we had a great discussion about Pete Sampras; it also helped that my child had a book about him which discussed his thalassemia b minor and his strategies to overcome this as a sportsman. Now the sports staff at the school may think twice before pushing kids too far with strenuous sports and customise a physical education program more suited to their needs and genes.

All the best.


 

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