My daughter and the B-Thal major.

Hi,

I am new here  . I have two children 9 years old boy (Healthy) and 8 years old girl (B-Thal Major) we do blood transfusion every 3 weeks.

My questions are: Is she going to need more blood transfusion when she started her monthly period?
Is it possible for her to get pregnant in the future? What about the Bone Marrow Transplat is it going to have a serious side effect on her before and after the operation?

I don't really know what to do 

Please help me

Welcome to the site.

Thalassemia major prognosis is excellent with the current medical advancement. It is possible to get married and get pregnant with thal major. Infact, lot of our thal major members are married with children and living healthy lives. Do not worry, keep chelating your girl and make sure she gets her transfusions regularly. Good Luck.

The requirement of blood will increase when she would hit puberty, however, the amount of extra blood varies in different people, I don't thnk it would increase tremendously though. The blood loss from the period is not a bad thing in Thal major, as it is also a source of iron excretion as well.

Bone marrow, a possible cure for thal major is a serious decision that has to be considered by parents only. We have some members whose children are cured, however, there are some complications that may arise as a result of Bone Marrow.

Please keep posting and ask more questions, specially all your concerns.

Feel safe here.

Hi Sarah,

Welcome on the forum,As Canadian Family said,prognosis of thalassemia is way way better now a days with current advancement in medicine field,if you'll read through the old posts you'll find our members who are thal majors and are parents too,getting pregnant shouldn't be a problem if you keep your daughter's ferritin levels close to normal,so that iron won't get over loaded in the glands that are responsible for reproduction.

Bone marrow transplant is a very tough decision and still if you want to go through it,it is advised that ferritin levels should be kept low and it is more successful while done in young age,one of our members Madhavi and Manoj's son went through transplant just recently,you can read about their experience here ,

http://www.thalassemiapatientsandfriends.com/index.php?topic=3125.0

Hope this helps,

Zaini.

Dear Canadian Family & Zaini,

Thank you very much for your reply. It makes me feel much better about it. Thank you very much for being nice.

By the way my name is Manal my daughter name is Sarah.

Thank you all and of course I'll think more than 1 million time in the BMT operation befor going through it.

Regards

Manal

Hi Manal,

Blood loss during menstruation is normally less than 40 ml, so it is not a big factor in the blood requirements of transfusing women. As mentioned, some iron is lost this way, leading some researchers to believe this is one reason female thals have traditionally lived longer than males, although non-compliance with chelation by males is probably more of a factor in lifespan.

I have just posted the results of a study about L-carnitine and sexual development. You can see it at
http://www.thalassemiapatientsandfriends.com/index.php?topic=3295.msg33455#msg33455

This is a very important finding, as delayed and arrested puberty have long been a problem in thalassemics. Proper treatment and correction with hormones when needed, can lead to proper development. This study showed the role that L-carntine supplements can play in assisting normal puberty. The routine depletion of nitric oxide (NO) from the cells appears to have far reaching effects that need to be countered. L-carntine is an important nutrient is this battle.

I also want to point out that this question by Manal is what led to my finding this article. These questions often lead to discovery of important and relevant information to those who come to this site. Our other Manal and many others have posed questions that have led me to information that is very relevant to many people. People ask how do I know so much about thal? How? Your questions lead me. I don't think of these things without the questions posed by those who need an answer. I don't live with thal and will never be able to imagine all the issues that confront thals and their parents. I need your help to do this. Keep those questions coming.

Andy,

One thing to note here, though it may be an exception to most women,

I was told that few women lose fresh blood during their cycles, I think I was one such case. Nothing helped pinpoint either a cause or a solution. The only thing that finally helped me is a med drug called ethamsylate. Even now I use it in emergencies to reduce the flow, but i do not know how it works or why it helps. Prior to that I was given hormonal pills for many years with no help.

I knew of another case several years back, who had a problem and her doctors made her take medicines too, saying she would have lost too much and turned into an emergency case.

This is rare so I dont mean to scare anybody here, bit I wanted to say that even there is a loss that seems more than normal, it should not be ignored under any circumstances.

Hi Preety,

About half of what is lost in menstruation is actually blood. The rest is cellular matter that is shed from the lining of the uterus. In a normal period, it's only 35-40 ml. This can be more with heavy periods. Thal majors tend to have less pituitary activity so lighter periods are often common among majors, although just as in all women, other conditions like fibroids can cause heavier periods. I would think heavy periods may in some ways be more problematic for thal minors than they are for transfusing majors, who have the blood loss compensated by transfusion.

I looked up ethamsylate and it's a fairly safe drug that is used to reduce bleeding by promoting platelet aggregation. The only common side effects are nausea, headaches and skin rash. I think its usefulness far outweighs the minor side effects.

And I agree. If anyone is regularly having periods much heavier than normal, talk to your doctor about it.