Reproduction care in Thalassemia Study.

http://www.thalassemia.org/index.php?option=com_content&view=article&id=91:reproductive-care-in-thalassemia-study&catid=1:latest-news

January 26, 2009 - Stephanie More, BSc, a genetic counseling student at Sarah Lawrence College, is conducting an online study on reproductive care for women with thalassemia.  Below is information from Ms. More for any patients who may wish to participate in the online study.
"It is only recently that women with certain serious conditions, such as thalassemia major, have had successful pregnancies. This means that there are not well established guidelines for the medical community on how to provide reproductive care. 
 
"As a Master's student in human genetics, I hope that this thesis study will be a preliminary look at how to provide the best care to women with these conditions who may wish to become pregnant."
 To complete the anonymous survey, please click here.
http://www.surveymonkey.com/s.aspx?sm=OtrUHqbIZdXK4V_2bXaOiZFA_3d_3d
 
CAF  provides information on this and other trials and studies without endorsing specific or individual projects.

I think if anyone participates,it will be helpful.

Zaini.

I hope that thal major patients who wish to have children would benefit from contacting this group.  Other thals can gain from the results that this study yields. 

Sharmin

Actually, this is a survey for thalassemia/sickle cell/cystic fibrosis girls/womens and I think anyone from anywhere can take the anonymous survey, if I am not mistaken. So, I think all those who can take this survey should take it.

Reproduction in thalassemia can be a big issue since we know how iron overload can effect glands and in turn hormones.

Yet another reason to keep chelating.

Zaini.

You are right Zaini, and this is where our children's generation may have an advantage.  I think that there are two important reasons for this:

1) Not everyone had access to desferal in previous generations so iron overload affected their fertility.

2) Desferal is to be used when ferritin levels are 1000 or above - so essentially thals rarely had iron levels below 1000 in the past.  Now with other choices of chelators and the possibility of combination chelation therapy in the future many thals can maintain their ferritin levels lower than 1000 thus further increasing their chances of developing normal and healthy.  Growth, development and reproductive health is therefore less likely to be hindered. 

I wonder if these factors will make a difference for future generations.

Sharmin

I wonder if these factors will make a difference for future generations.

I am sure they will,and although desferal wasn't widely available in the past,and even if it was,there wasn't much choice in chelators,and still we see thal major moms like Sydneygirl and a few more members,that sure gives me a hope,recently at our hospital,i heard about a thal major guy who got married and now he is a dad of a baby boy,i was so happy to hear this news .

Zaini.

Zaini,

A friend of mine, who is thal major is now 41 years old and an active mother of 3.  Imagine 3 pregnancies and deliveries!  She began chelation at the age of ten because desferal was not available to her at the time, but since it has been available she has chelated religiously.   I believe that she has an MSc or a PhD.  She is as healthy and beautiful as can be.  Her children are involved in various activities and she drives around taking them to their activities. There is every indication that she will live a full and healthy life.  I find this very encouraging because she was born 41 years ago and our children were born less than a decade ago. 

As you have said Zaini, with proper chelation anything is possible for thals.  I am hoping for the best for all thals,

Sharmin

What an inspiration Sharmin. I really feel happy for her, definetly she is a fighter

manal

Yes,people like her give us hope for our kids 

Zaini.

Dear Sharmin and Zaini,

You are both right. As a 33 years old beta Thal i agree wtih the fact that starting desferal early and maintaining to use it often can be helpful in so many ways including reproductive issues.

when i was a child,i did not see what desferal can do in long terms. i always dont want to use it but my mum kept on pushing me to use desferal. it was hard to find desferal in the 80's but my parents kept finding ways to get it for us. I was 10 years old when i started desferal.

Now, as i am older and have a child on my own, i finally realise that it sure helps in so many ways. Most of my thal friends Who do not use desferal now had either passed away,looked thalassaemic or have some physical disadvantages which include reproductive failure.

Both of you are lucky that now desferal is widely available and can start on your child as soon as possible. I really believe that in the future, your kids can grow up and achive whatever they desire and it is all because of dedicated parents like the both of you. 

 

Dear Nur,

Thank you kindly for your encouragement    Courageous people like you and determined parents like your's have inspired us and paved the way for us in raising our children.  Thank you for inspiring us to do more and showing us what the hard work we put in today can do for our children in the future. 

Wishing you and your child a happy and healthy future 

Sharmin

Nur, hats off for your parents


manal

Dear Nur,

People like you give us hope,i wish you and your family a world of joy,my daughter started transfusing when she was 3 years old and started desferal when she was 4 years old,she was on combination therapy of desferal and L1 for about three years,and now she has started Asunra,her highest ever ferritin was 2400,but we have never done any MRI or anything to check liver iron concentration or to check iron in any organ,i am planning to do that soon,once she is settled with Asunra.

Zaini.

Thanks a lot for your kind words.  It makes me feel happy to see the young generation of Thals today received  good care and enough education thru conferences and support groups like this. When i was growing up, we did not have these advantages and took matters into our own hands while praying to god hoping that what we are doing is right thing to do. What matters most during those times are getting enough blood and chelate. That's all. We had no idea about what the irons could do.

My daughter is a thal minor. Although i know today's healthcare is far better than my time, i still get worried. Being a Thal Major, i did not really pay attention to thal minors until i have a child of my own.It's like begiining all over again, finding out what is thal minor and the good and bad things of it. But now, i have new and modern mums like you guys to look up to. So it's an equal balance that we both can benefit from.

To Zaini:

Wow..the highest ferritin is only 2400? that is good bec i have a far more ferritin than hers 

Nur,

I know you still have a ways to go to get your iron down but you've been doing a great job. Please keep up the hard work taking desferal. I so want to meet you again.