Marrying a thallassemic

Hey,

Hope all of you are in the best of health.

Im not sure if im posting in the right place, sorry its my 1st time.

Im writting because i would really like so advice.

My boyfriend has thallassemia major, hes 24, he has asked me to marry him and i really want to but im scared. He leads a really normal life and i never notice that hes thallassemic until he goes for his transfusions. He also has hep c which he had tried treatment for but has not worked. Otherwise he is alright at the moment. He does have iron in his heart but his heart is stil in the normal range at the moment. We went to a fertility doctor and it he is infertile. He is currently on sustanone. But apparently doc sed he can go onto another hormone which may allow him to have kids.

My biggest fear is losing him and im scared of marrying him and losing him. i dont think i can cope. Im scared of not having kids too but im adjusting to that now.

I just dont know what to do. Can a thallassemic have the same life expectancy and other ppl? Will his condition deteriorate when hes in his 30's?

Do thallassemics get married? Do you know any with thallassemia major who hav had kids?

Sorry if this email hurts anyone...Im just so confused..

Waiting for ur response

Thanks

Hello Confusedgirl,

Thallassemics do marry too. Some thal. major have also children.

I am not the best person to answer this questions, because I dont have a boyfriend. I do think about the future.

I think it's very important that you do a dna test to rule out that you got thal. as well. This might be something to do with your background. But, all new babies in the uk are tested for thal.

Btw do you know how high your boyfriend's ferritin is? Is he doing any treatment? If he does he has a change that his heart function will improved. Deferipron (L1) is the best with removing the iron out of the heart.

I am sure they will getting answering your questions at the begin of the new day.

Good luck!!!

Best wishes, Dore

Dear confused girl,

Welcome to the forum:)  I understand your confusion.  I am the mother of a 10 year old boy who has thalassemia. 

I know of many thalassemia majors who are married and have children.  I know a 40 year old female who has 3 children, and I know a 27 year old who is married - he and his wife have a one year old daughter (cute as a button). 

With proper treatment a thalassemia major can expect to live a normal life span and quality of life.  Much of how well a thalassemia major does depends on his/her support system.  If you love your boyfriend and want to spend the rest of your life with him, you can be that support for him.  Your love and encouragement can allow him to live a healthy and long life.  With patience and faith, perhaps you can have children too, assistance may be required for you to have children even though this is not the case with everyone. 

Of course there are risks with anyone, especially if they have a chronic condition but in this day and age you have every reason to be confident that you and your boyfriend can have a long and healthy life together. 

I wish you luck and happiness with any decision that you make,

Sharmin

Hello! 

I think the most important thing that you have to think about is whether you love him or not. If you love him, don't give too much importance to kids, you can always adopt if he finally is steril. Think about that quote that says "The greatest thing you'll ever learn is to love and to be loved in return."
I would tell you to think about you two leaving aside other circumstances of your life. If you love him and you feel that you want to be with him forever, just do it. Don't get mad thinking about future. I really don't want to hurt you or make you feel bad but illnesses are not the only reason for death, you can die in a car accident or other reasons. Just live the present and enjoy the life with him.

About if thals can get married and have a normal live, I would say yes. In my case, I'm not married but I know 2 girls of 38 who are married (one of them has a kid) and they are completely happy. Just think about your boyfriend, you said that you only remember he is a Thal when he goes for his transfusions so you know he can have a normal live. Maybe you'll have to get used, if you are not yet, to scheduling your activities, I mean, to plan things depending on his hemoglobine. If he has just been to have his transfusions, you can do more busy activities and if he has to go to the hospital in short, you can do more calmed activities. That's the way I plan my life with my friends and family.

Well, that's the way I see it. Welcome to the forum and do not hesitate to ask as many questions you have, you don't hurt anyone, we are all here to help each other.

Kisses,

Laura.

Confused girl,

Welcome on the forum,i hope you got your answers.

Laura,

  very well said querida,i love this positive attitude  .

Zaini.

Hey,

Thank you guys, your so nice. It must be a thallassemic thing coz you all seem so helpful and my boyfriend is like that too.

In reply to some things:

Iv already had a blood test and i dont carry the trait.

He is on exjade at the moment. I dont know his ferretin level,hes told me in the past and i dont wna ask him now coz i dont wna remind him.

To be honest hes active all month, he does too much, he does more than a normal person, i get so tired,he does so much more than me, he works full time, goes gym, is in charge of a football league, does charity work...the list is endless. He annoys me coz he does too much and i get worried for him coz a normal person would be exhausted let alone him.

Its nice to hear that thalls get married and have children..by any chance do you guys know ne1 i can talk to who has had children.

I know you said, if i love him, it shouldnt matter, i feel like i love him, but it does matter to me? i dont know what that means.. I am generally phobic of needles n get faint in hospitals so i dont think im the best person to deal with all this. Also im a pharmacist so i know quite alot about medical conditions so i guess it makes me more aware of everything.

We have been together for 2 years and i dont think iv still fully accepted the fact that we may not have children. i love kids. the doctor said 100% he cant have it naturally coz his pitutary is damaged.

Iv been reading these forums and i can see alot of you suffer alot. But one thing i know and believe in is that god only makes the people he loves suffer because he wants them to enter paradise. When you are put under hardship, god is giving you his attention more than some1 who has an easy life.

I have a question, my boyfriend really hates taking his exjade because he says its like eating sand. Are any of you guys on it too? Coz i dont seem to sympathise with him, its something he needs to do and i cant see why he cant be 100% compliant. He is compliant more or less, but i think he misses occassional doses which really annoy me.

Also does ne1 have info on hepatitis, i think his is dormant...But im scared of contracting it

Anyway, thanks alot for your help, and i hope you guys have a good day!! im off to work now,

All the best..

Lotsa love

xxx

Hi confusedgirl,

welcome to the site

I am a thal major, 24 year old, and have been married for the past 2 years and let me tell u that it has been the best two years... i understand what u are going through to some extent coz when we were dating, me and my husband also used to voice the same concerns from time to time.. i want you to know its okay to be scared and worried... i am still worried about what the future holds for us.., but what i think is if you are going to be blessed enought to be with the person you love, you shouldnt let the "what ifs" be an obstacle...

as peartree girl and laura and sharmin said, there are so many thal majors who are married, and have kids.. a lot of them are over 30s and living a healthy life and like Laura said, death is the most uncertain thing in the world coz it doesnt take only those with an illness or a disorder..

u can be the support he needs... as long as he chelates and is regular with his treatment he can live a normal life.. you already feel he's normal, so the only adjustment will be the transfusions..

this is what i feel, however, the decision is entirely what you think is right for u and ure boyfriend..

if u have any questions, feel free to ask...
tc and hope we helped..

Maako

Hello!!!

I am on Exjade. At the beginning I also felt like eating sand. Then, I realised that I was preparing it badly.
Right now, I put all my tablets (3 of 500 and 2 of 125) together in a full glass of water and I wait for at least half an hour before taking it. When I take it, Exjade is completely disolved and it is very easy to take. After having drunk the full glass, I add some water and I take the rests in the glass. Next, I wait for at least half an hour more and I have my breakfast.

About knowing married people to talk to, the two girls I know don't speak English so I think it is not going to be possible.

Best regards,

Laura.

Well, am 21 years old Thal Major single at the moment but i have met two people at the hospital who are thal major age (25 & 28) they both are married and one have a kid of 1 year old.. so its like nothing is impossible! everything is possible !

One thal major I know celebrated the birth of his grandchild recently, so with proper treatment, much is possible. If your boyfriend says exjade is like eating sand, he should let it dissolve in the water longer. It does make it easier to take. He also has to be honest with himself. If he wants to take the responsibility of marriage, then he also needs to take the responsibility of fully complying with his treatment. He can't make excuses about chelating. I feel that any thal major who wants to make a lifetime commitment to another, also has to make a complete commitment to treatment. You are right to insist on total compliance with chelation.

Whoa!!! A thal grand parent,it's definitely a very heart warming and pleasent news .

Zaini.

Wow, congrats to the thal grandparent!  Congrats to all of us, seeing that this is possible!

Hey,

Thank you all for your responses!!

Wow im really happy to hear that there is even a grandparent!! wow....

Its definetly reassuring to hear of all these ppl who have had kids....

You guys have helped..

thank you

Oh one more qn...does anyone know if its allowed to leave the exjade to dissolve overnight? And drink it in the morning?

Hi.
I am not sure but i remember that i once heard that it shouldn't be left for a long time to dissolve. But i guess members who use can answer better

manal