Marrying a thallassemic

Dear confused girl,

Exjade should not be left to dissolve for very long, for the same reason that exjade should be taken on an empty stomach.  It is because exjade can be broken down by food in the stomach - so one should have exjade on an empty stomach in the morning and should not eat for 1/2 hour after taking exjade.  

The fluid in which exjade is dissolved can also break the exjade down, so one should only leave exjade in the liquid very briefly (as long as it takes to dissolve it) and consume it immediately.  

I don't let the pill sit in the juice.  

Does your boyfriend dissolved the pill in juice or water?  I don't think that exjade has any flavor, but it has a chaulky texture.  However, this unpleasant texture is a small sacrifice considering what you are gaining - good health and a longer life.  Oral chelation, if it is well tolerated and effective for your boyfriend is more convenient than desferal.  I hope that your boyfriend is very compliant with his chelation - basically the length and quality of his life is directly correlated with regular chelation.  He should not go more than 24hrs without chelation.  

It is a good thing that you are thinking about what it entails, choosing to marry someone with thal  It is good for you to know what is involved before you embark on this journey.  You have every reason to be optimistic but there are a lot of responsibilities and a constant learning curve.  I wish you the best of everything.  Please feel free to lean on us - we will help you with everything that we can, you should never feel alone in dealing with thalassemia.  

Best of luck, I wish you and your boyfriend all the best,

Sharmin

Hello! 

I asked a year ago to the sales representative of Exjade and she told me I should not leave Exjade dissolving for more than an hour and a half or two hours maximum. In my case, I usually prepare Exjade when I wake up, then I have my shower, I get dressed and I take it. But sometimes, if I wake up earlier than usually, I prepare Exjade and I go back to sleep for an hour more. Next, I wake up at my usual time, I take Exjade and I continue with my things (shower, etc).
In my opinion, this last option is the best one because you only have to wait for half an hour before having breakfast; but it is very hard to do it on purpose because we would need two alarm clocks so I just do it if it happens that I wake up earlier.

Best regards,

Laura.

Hi confusedgirl,
little late i replay on your post.

You have your boyfriend,he, believes in you and  he loves you and want marry with you. Thals can get marry and have normal  family and life like every person.
 I know about thals males which are married and have families and are over the 30s. I know about 44 years man tahl major , he is married and have healthy daughter . I have a friend 30 year old thal major woman, she is married an have a wonderful family, and i hope they will have kids soon too.
  I don´t know where are you and your boyfriend from, but i want to tell you that today in many developed countries with good health system and acts,  with adequate treat and constance and responsibility  the patients can have absolutely  normal and fully life, with  expectancy like the other people .  Thalassemia can be controlled like chronic disease that not obstruct the patient to have a good education, career , work, to realize many activities, have family including kids. And form what you tell us about your boy he is doing very well.
 I don´t remember in details but read something about infertility in males with thal- the process and the medicines to conceive kids, and the results were very positive. I can check it and if you want i can send it to you when I find it.
 And also of course there are other solutions too- in vitro, donoring and adoption if having kids is so important for you.
 And about the 30 years, its not correct- today there are patients 40, 50 and more years old and this who are over the 30s are not rare cases. As  i said with the necessary  treats and regiment thal can have same expectancy like health person.

 What is the guarantee when someone marry to completely  health person and happen some accident or something else and also can lose him and be alone.
 Year after year doctors, patients, families , other people do many things and the treatment  of thalasemia is going better and converts it in chronic disease like many other and not means the scary word thalassemia that it was many years ago.
 Don´t be scared, listen to your heart and if he is the person that you love don´t think in what can happen the next 6 or 60 years, but believe and  fight next to him and next to all the persons with similar mission. And i say mission, no problem because as you said God gives difficulties to the people that he loves more, because they can resolve them.
 Enjoy every second together with your boyfriend , try to do many things together, make trips, and enjoy all the little and everyday human joys that the live gives us.
 And why not after 6 and much more that 6 years steel be together and be one happy family and his health not only not to be worse that now, but to be better. With the advance of the medicine today many things are possible and hope soon it will be accessible for all the persons that need it.
 Wish you  not 6, but 60 and more years of happy family live, if you accept. and wish you many belief. And give him courage, because thals are persons with very strong spirit, fighters and they do well with many difficulties, much better that people without health problem, they can achieve many in the live if they decide it. And they did not did all this to  surander  and they will live much more then statistics say.

 Marriage is big responsibility in which we decide to share the good and the bed moments with someone special and he the ours too.
  You have to decide  if you feel ready and if is the write moment to take this responsibility,and the same means for him.
 My opinion is that we marry to someone because all that virtues that is he like a personality, we marry the person, not the illness, we love the person , not the illness  by the same way that we don´t love because the car or the house or whatever, and you have to listen what your heart says. And to take your decision
  I hope i don´t hurt you with my words, i tell this with all my best wishes cause i see you care vary much for him and i think you love him very much
 I hope he also is familiar with all the responsibilities of marriage and he appreciate you and care for you as much as you for him. Hope he understand and appreciate your difficulties and worries too and to permit you to be next to him in all. And because of  both to fight even more.
 

 Wish you to be very happy  the both,
marry or not, whatever you both decide, the decision must be only yours, of the both.

best regards 
Tsveta

p.d. 
if you want more information and want to send you for the fertility tell me please or in my profile  is my e-mail, you can write me and i will send you what a have
kisses

i always heared about MALE thalassemic patients who have daughters
but i did not hear about MALE thalassemic who have sons
is there anyone who know MALE thalassemic who have son?
and do that have any scientific background or not?

Mohammed,

in my Blood Transfusion Unit there are two male thals with sons-one of them has twin sons, the other has got a son and another baby on the way.

Lena.

Thanks a lot Lena for informing me

dear confused
i checked all the replies, everyone is in the favour of marring. but no one talk about HCV pls don't forget that he got HCV positive... so the chances are there to get infected with sexual relation.. and also there is a chance to get a baby HCV positive so pls take a advise  from ur doctor.... with best wishes of ur happy married life

Hi Mumtaz

 The percentage of getting HCV through sexual relation is a very low percentage (about 3% only) and it decreases if this relation is a monogamous long term relation
http://www.hcvets.com/data/transmission_methods/sexual_exposure.htm#New

Quote

No Evidence of Sexual Transmission of Hepatitis C among Monogamous Couples: Results of a 10-Year Prospective Study

The risk of sexual transmission of hepatitis C virus (HCV) infection was evaluated among 895 monogamous heterosexual partners of HCV chronically infected individuals in a long-term prospective study, which provided a follow-up period of 8,060 person-years. Seven hundred and seventy-six (86.7%) spouses were followed for 10 yr, corresponding to 7,760 person-years of observation.

 


Also the transmission from the mother tothe baby in pregnancy is considered very low

This transmission appears to be inefficient, occurring in approximately 5 percent of live births to infected mothers.

http://www.hcvets.com/data/transmission_methods/hcv_and_pregnancy.htm

Hope this helps

manal

One of my friends has a new child (some know him too) and it was a son. I think he was very suprised too, because the new babyboy still hasn't a name!    Nothing is impossible!



Dore