Discussion Forums > Thalassemia Major

my partner has Thala major

<< < (2/4) > >>

smile22:
his iron is high, he used to have tablets but it didnt work, then he was given drinks but that didnt work so just recently hes been having injections at night (a pump) so hopefully that will bring his iron level down. i also read up about thala major patients having a high risk of heart failure... i cant help but worry...

Andy Battaglia:
Hi Smile22,

The UK is a very good place to be if you have thalassemia, as care is excellent there. I know two guys there who will both turn 51 this summer and they both are doing quite well. Zaini has posted the info for the best treatment center in the UK. If your bf is already going there and complying with his treatment program, there is really very little reason to be concerned. Most male thal patients who have complied with treatment should have no problem having children. If he has to take hormones, it is not a big deal and it will help him become more fertile if this is currently a problem. Perhaps you can arrange to meet together with him and his doctor to address any concerns you have. If you can talk with nurse Emma, you will come away with a very positive attitude.

Families can be very insensitive and also ignorant if they don't take the time to learn the facts. I will tell you that 25 years ago they would have told you that your bf probably would not live past 25, but that has changed so much, and quite honestly, there is no one on earth who knows how long thals can live because every single day, new records are made as far as the length of life for thals. Patients are getting older, new treatments are being developed and new understanding about the health problems thals may face as they grow older is being achieved, which of course leads to new strategies for treatment and new approaches to thal care throughout their lives.

There are no guarantees in life and people need to remember this. I have known two men who were taken this past year by Amyotrophic Lateral Sclerosis (ALS). One had not yet reached age 50 and suffered for several years before succumbing. Both of these men seemed to be in very good health before ALS struck. The point is, we don't know what will happen to us in life. You could marry another guy who seems perfectly healthy and he could die from a heart attack that no one expected. Would that make it any better in your family's eyes? The difference is that your bf knows he has thal and with proper support, he can live a good life. Your family needs to become better informed about thal and they should also realize that when they say he'll be gone by age 45, they are relying on outdated information. By the way, the grandfather I know who is a thal, just turned 45 recently. He does not expect to be leaving planet earth anytime soon. I would suggest that you do your best to inform your family about the rapid changes that have taken place in treatment for thalassemia and that more are on the way and that your bf has a very good chance of living just as long as them. We have some very good information about thal and also about expectations on our site and I suggest you read them so that you can understand better for yourself, your bf and your family.

http://www.thalassemiapatientsandfriends.com/index.php?topic=1575.msg13006#msg13006

http://www.thalassemiapatientsandfriends.com/index.php?topic=2751.msg26480#msg26480

And lastly, make absolutely sure that you are not a thal carrier before having children with a thal or even a thal carrier.

Sharmin:
Dear Smile22,

I completely agree with Andy's post above.  I have adult thal major friends who have children and they are doing very well.  My thoughts are that the life span of a thal major these days (if well managed) should be the same as a non thal.  I wish you and your boyfriend all the best in your future. 

Smille22, what are your boyfriends iron levels?  Remember that even if his iron levels are high, iron levels can be reduced significantly with proper chelation.  I am glad that he is using the pump - it will help.

Please feel free to ask us anything else that may be helpful to you,

Sharmin

nice friend:
Dear Smile22 ,
 :welcome2 , i hope you're getting answer of your concerns n questions ..

Best Regarrds
Umair

confusedgirl:
Hi there honey. I can very much relate to you as i went through the same thing. I was considering marrying a 24yr old thal major and you will find my posts here somewhere. I pretty much said the same thing that i see him as normal. I guess every individual is different. My bf was also here in the uk. His iron is high too but hes takin exjade. Anyway. The issue of children relies on the fact of whether your boyfriends pitutary gland is damaged. Does he take sustonone? If so its unlikely that you will conceive naturally. As i went to a fertility doctor with my bf and thats wat we were told. You have to make yourself accept that ivf maybe an option. I think lifespan they can live to be old like others. But it all depends on iron levels in organs. Things with my bf, have got worse. He is now falling into heart failure. Chelation is the only thing that determines lifespan. He can live up to an old age like others if its done properly. If you want to marry him. You must accept everything. People can tell you the good stories. As the lovely people on these forum do. But it really depends on each individual. Thallassemia is not the problem. Its the issues secondary to thal that are the problem. Sorry to sound negative. But i really believe that if u love him enough to marry him and not think about all these other things because it will freak you out. As it did to me. Talk to me if u hav ne qns. I've been through it all. Take care.

Navigation

[0] Message Index

[#] Next page

[*] Previous page