thal lifestyle

hello every 1

i would like to ask some Qs,, and i hope some 1 can help me!

a guy proposed to me,, he has thal majer,, this is totaly new situation for me,, i dont know wt exactly their lifestyle,, all wt i know is that he is having a blood trasfusion once a month,, with the chelation treatment,,

i had the blood test for me,, it came out that i have G6PD!! but am not a thal carier! would this affect our offspring?

wt more do i have to know abt his condition? wt other complications he may have?

wt is their life span? do they have low imunity,, so they r more prone to serious infections?

i know i asked too many Qs,, and some of them were rude!!
bt i really need to know so that i can deal with the situation!!

regs
dolly

Hi Doly,
  ,i m not an experty soo cant help you over this, but, i hope that you will get answers of your concerning questions soon , our experties ( Admin and moderators ) will definitely help you to understand Thals and their lifestyles , i hope they will introduce with the complete pic of it (thals and Thalassemia )..... Keep visitng the site and stay in-touch with us ...  and dont forget to tell that guy to join us hahahaha.....

i know i asked too many Qs,, and some of them were rude!!

dont worry abt it , questions are always welcome here, bcoze questions are the key way to kowledge , thats wat our way of thinking is , soo nobody would be rude on you and never be tired of answering your concerns and questions . soo , feel free to ask wat-ever you wana know about and dont hesitate to share wat-ever you want to share with us ...

PS : Wait for experties to answer , i know that, they will reply this thread and answer your Qs and concerns ASAP .... Keep visiting,

Best Regards
Take Care
Umair

Dear Dolly,

Welcome to the forum   My 10 year old son has thalassemia major and I can give you information based upon my knowledge and experience with thalassemia. 

If well managed with blood transfusions and chelation, an individual with thalassemia is not "sick".  If hemoglobin levels are maintained and iron levels are kept low - then an individual with thalassemia can expect to live a full life span and to fully participate in life.  Individuals having thalassemia major should also take supplements such as IP6, vitamin E,D, zinc, calcium/magnesium, selenium and others, they should also exercise regularly (as per doctors recommendation).  Thalassemia majors who have not had their spleen removed should have completely normal immune systems. 

In your fiance's case - you should find out if he has been transfused properly, what his iron levels are and whether he takes vitamin supplements - this will give us more information about his health.  You should also find out if he has a spleen.  It is great that you are taking the time to learn about thalassemia, you will be a great source of support for your fiance - often when people with thalassemia marry individuals who understand and support them they do far better.  I hope that your fiance is willing to allow you to be a partner in his health care - so that you always know what is going on and you will be able to help him maintain healthy habits - we will always be here to help. 

If you can find out the answers to some of these questions - we can guide you and your fiance so that he can live a long and healthy life.  My belief is that treatment for thalassemia is going to make management of thalassemia much easier in the future and there is a strong possibility that a cure, in the form of gene therapy may also be available in the future. 

At the same time, I am going to say that as in any marriage - there will be struggles - and it is very important to stay on top of this condition to avoid any problems.  The more you learn about thalassemia the better informed you will be about what your future will be like being married to someone with thalassemia.  Personally, I am finding that other than transfusions my son's life is very normal and he can do anything that anyone else his age can - he is a very capable, intelligent and healthy little boy. 

I hope that others will be able to give you additional insight, please keep posting we are all here to support you and to help you learn.

Best wishes and welcome to our site,

Sharmin

Hello Dolly,

Welcome on the forum,Sharmin explained it really well,only few things i'd want to add is that you should ask your fiance to join this forum himself too,so he can learn about new approaches taken towards thalassemia and you can learn what is thalassemia.

We have quite a few thal major members who are married and have kids,even our administrator Andy knows a person who has become a grand parent,so having kids is not a problem in thal unless iron over load is very high and it has damaged the glands,do you know how much is your fiance's ferritin level?

Good luck with every thing,what ever decision you take,we are here to support you .

Zaini.

Hi Dolly,

To answer your other question, G6PD deficiency and beta thalassemia have no relation to each other and neither condition would have an effect on the other. Some basics. If you have a child with a thal major, all of your children will be thal minors (carriers). This may or may not cause some symptoms of anemia, depending on how high the hemoglobin level can be maintained. The odds are that 50% of your male children would have G6PD deficiency and 50% of female children would be unaffected carriers. G6PD deficiency. also known as favism, can have no symptoms or there can be hemolytic episodes caused by ingestion of fava beans and certain drugs. A complete overview can be seen at http://drug.pharmacy.psu.ac.th/wbfile/159254520461.pdf
Most people with G6PD deficiency will have no problems as long as the precautions described on that page are followed.

So, your children would be like hundreds of millions of other people on earth who are thalassemia carriers. There would be no added danger if they carried both thal trait and G6PD.

What you need to find out from the man who has asked for your hand is what condition his health is and is he compliant with his treatment regimen. If he is compliant and has low iron stores and no other health problems, there is no reason that he cannot continue to have a full healthy life. The treatment available for thalassemia today has completely changed the long term prognosis for thals, as long as they comply with their treatment. Please be aware that treatment does take up some time and that there are routine annual tests that should be done. However, we know many patients who work full time and have lovely families. As long as this man is compliant with his treatment regimen, there should be no medical reason to not marry him.

Hi,

I'm a 26 years old thal. I just can talk about my experience in living with thalassemia. As I was saying, I'm 26 and I have a completly normal lifestyle. I work, I study and I have a normal relationship with friends and family. I don't think there are problems in having healthy children because I know 2 people (a part from the ones in this forum) which are thal major and have healthy kids.

Don't worry to much about the situation and just follow your feelings.

Best regards,

Laura.