my partner has Thala major

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Offline smile22

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my partner has Thala major
« on: May 03, 2009, 05:31:50 PM »
hi, im goin to marry someone who has thala major, hes 29 years old and by meeting him you wouldnt know he had it. my family knows about his condition and are tellin me not to marry him.. everyones (my family) sayin hes got a short life span and will only live up to the age of 45 which isnt a nice thing to hear.The doctors have said they cant predict his life span. im not a carrier so our children wont have thalasemia will they? they will just be carriers...? it is possible to have children though isnt it?
he goes every 4-6 weeks for his transfusions and had his spleen removed when he was a child. ive done some research but cant find any cases of people over the age of 50 with thala major......... im really worried and have been reading up on heart failure too. i dont want anythin like this to happen and im just confused. do you know any sites, or of any cases that involve the elderly with thalasemia major who have had children? i really need help and advice, im confused and mixed up with all the information being thrown at me. all i know is i dont see him as having thala major, i see him as my life long partner, hes perfect in my eyes, i just hate the fact that my family are tearing us apart.
« Last Edit: May 03, 2009, 05:37:56 PM by smile22 »

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Offline Lena

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Re: my partner has Thala major
« Reply #1 on: May 03, 2009, 05:50:02 PM »
Dear smile22,

 I know lots of thals here in Greece over 50. Life span is open now in thalassaemia, do not worry. If a thal complies with his/her therapy, then everything is normal. And yes, you can have children and they will not have thal, they will only be carriers. Where are you from?

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Offline smile22

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Re: my partner has Thala major
« Reply #2 on: May 03, 2009, 05:58:28 PM »
Im from the UK, its just difficult with my family being so negative .... are the chances of us having children limited though? i nkow he can have hormonal injections but what does this actually do?
x thank u for your quick reply.

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Offline Zaini

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Re: my partner has Thala major
« Reply #3 on: May 03, 2009, 06:02:12 PM »
Hi Smile,

Welcome to the forum,We have quite a few members who are married and have children and they are thal majors :) one of them just had her second baby :) and our administrator Andy knows a guy who has become a grandfather :).

With on time transfusions,and proper chelation,thalassemia is a very manageable disorder,do you know what are your Boy friends's iron or ferritin levels?

If he is maintaining his hb and his ferritin is low there is no reason to believe that he can not live a haelthy life and have kids,yes having kids is definitely possible but this all comes down to maintaining ferritin levels,and if he has high iron levels,still not to worry he can start aggressive chelation and get rid of his iron.

As to predicting life span,no one can predict anyone's life span,its in God's hands,but please be assured that with proper maintainance thalassemics can live a fairly normal life,can have careers,become parents and everything and anything they want to do.

Please feel free to share if you have something else on your mind :) .

Zaini.
^*^Xaini^*^

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Offline Zaini

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Re: my partner has Thala major
« Reply #4 on: May 03, 2009, 06:08:38 PM »
UK has very advanced thal care,there is a very good hospital in London where a thal specialist is present.

Dr. Farrah Shah, Specialist (Thalassemia Physician)
Emma Prescott, Specialist (Thalassemia Nurse)

The Thalassemia Clinic, Mercers Ward
Whittington Hospital NHS Trust
Highgate Hill, London, N19 5NF

Phone Number
02072723070

Where does your Boy friend goes for transfusions? Knowing about his ferritin level is very important,low ferritin levels can help lead a normal life,and i'd say again if he has high levels still he can start right now with your help and can achieve the goal,one of our members had ferritin level of 13000 and he brought it down to 1300 after an year of aggressive chelation,so he might need your support but he can do it.

Zaini.
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Offline smile22

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Re: my partner has Thala major
« Reply #5 on: May 03, 2009, 06:36:24 PM »
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...

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Offline Andy Battaglia

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Re: my partner has Thala major
« Reply #6 on: May 03, 2009, 07:15:28 PM »
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.
Andy

All we are saying is give thals a chance.

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Offline Sharmin

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Re: my partner has Thala major
« Reply #7 on: May 03, 2009, 07:23:44 PM »
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
Sharmin

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Offline nice friend

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Re: my partner has Thala major
« Reply #8 on: May 03, 2009, 07:24:37 PM »
Dear Smile22 ,
 :welcome2 , i hope you're getting answer of your concerns n questions ..

Best Regarrds
Umair
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

Re: my partner has Thala major
« Reply #9 on: May 12, 2009, 07:25:14 PM »
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.

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Offline Andy Battaglia

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Re: my partner has Thala major
« Reply #10 on: May 12, 2009, 07:35:21 PM »
Confusedgirl,

Is your bf being treated for heart failure now? The key is IV desferal for up to two weeks. Heart failure in thals is reversible. For more, see the post at
http://www.thalassemiapatientsandfriends.com/index.php?topic=1451.msg11816#msg11816
Andy

All we are saying is give thals a chance.

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Offline PositiveVibes

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Re: my partner has Thala major
« Reply #11 on: May 12, 2009, 07:41:12 PM »
Hi ! I just want to share my opinion with you. and to tell you that there is nothing better than loving the person who si next to you, no matter if he is deaf or he is blind or as it is in our case - having thalassemia major. if you do some work and read about the modern treatement of patients with thalassemia you will really understand that nowadays these people live, work, have families as the normal people around us. Everyone has some health problem and thalassemia major does not make someone uncapable and with limited abilities to live his life happily. So, please take it into consideration that if your bf receives a proper treatment I am absolutely sure that you will have wonderful time together with children and beautiful moments. Keep in mind that there a lot of improvements to the treatment of all patients and I hope there will be even new technologies and methods that will help us.   Wish u luck !
Rozitka

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Offline PositiveVibes

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Re: my partner has Thala major
« Reply #12 on: May 12, 2009, 07:43:54 PM »
UK has very advanced thal care,there is a very good hospital in London where a thal specialist is present.

Dr. Farrah Shah, Specialist (Thalassemia Physician)
Emma Prescott, Specialist (Thalassemia Nurse)

The Thalassemia Clinic, Mercers Ward
Whittington Hospital NHS Trust
Highgate Hill, London, N19 5NF

Phone Number
02072723070


Zaini.

Sorry for asking this question here, but are you having your treatment there? Is this the best hospital for adults with thalassemia major. I intend to transfer my education in the UK and I am happy to see that u have some information about a doctor and nurse in London. :) If you know some details about the particular treatment there, please share it with me :)
Rozitka

Re: my partner has Thala major
« Reply #13 on: May 12, 2009, 07:51:23 PM »
Hey andy. Thanx. No hes not being treated for heart failure yet. I don't think its actually fallen to that yet. He was being monitored and they want to put a portocath in and iv chelation. He is v.sad n scared. When he was young he had a portocath which got infected and he got really ill. I don't really know what is gna be done.

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Offline Andy Battaglia

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Re: my partner has Thala major
« Reply #14 on: May 12, 2009, 07:51:43 PM »
Hi Rozitka,

I know many people who have been treated at Whittington. Dr Shah and Nurse Emma are very highly regarded by patients and parents. It is an excellent treatment center. Also, I asked nurse Emma at the Singapore conference about foreign students who have thal and they are covered for treatment in the UK while they are studying as long as they go to a UK university. I would suggest contacting them in advance.
Andy

All we are saying is give thals a chance.

 

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