Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: kabir_love on April 13, 2009, 08:22:36 AM
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hi every1. im sorry but as i m goin to many many post and i m getting little confuse and irritated sorry. now please i need some help
I HAVE MY DAUGHTER CORD BLOOD CELLS PRESERVED. now my son is 3 years and i have to start looking for the transplant and other thing i want to for umbical cord blood cells transplant and i need the place and good doctors to have knowledge about this case. i can show them my daughter test done so that they can see if anything wrong with preseverd with stem cells also and other things. in india is not sucessful and vellor as andy stated in one of the post that the resulst are 65% so im afraid of it now.
please tell me where can i start now with and discuss about my case.
waiting eagrly
micky
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Hi Mickey
First of all i want you to think thorughly before taking the decesion of the transplant and to weigh the risks accompanied in this procedure with the present management of thal now a days.
Second,make sure that the stem cells of your daughter to be tested in order to eliminate any possibility of a genetic disorder that could cause problems to Kabir
To my knowledge, the center of Dr. Lucarelli in Pesaro/Italy is the best center for transplant in thalassemia in the world with the highest success rates
Good luck in what ever you decide and please keep updating
manal
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Hi Micky
You should consult a good hema probably someone in AIIMS. They will guide you and also explain the pros and cons in detail. According to our hema he rates italy and USA equally and UK follows after these two centers. Do let us know whatever you decide.
take care
maha
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hi
which centre is in US and uk? name. for italy i know but for there i dicuss with my doctor as he said in italy transplant cost is i can manage but if any complication follow ahead of GVHD or infections then for treating that the cost multiplie in many times and i cant afford that then i m scared of it. so i m then looking for option as best to it but i can go through it easly
please post proper names of places and links if you have in this post so i can accordingly discuss
i m testing properly for preserved cord blood for LCH and other reports of my daughter to avoid any infections ,if we get 100% results then ill go forward otherwise will see another option . i cant take 1% risk in this
we i know its a tough decision but i had thinked lot and lot and after 30 years as i had see thals. here they all are facing many problems and life is good or not i m really so upset and i cant even think if of my son having any prob. so i must do this i think and sucess is 99% cuaz its related donor and 100% match.
Rest is upto God know.
regs
micky
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Hi Mickey
Please talk to the following Doctor, he is an authority on this subject.
Hope this helps.
Dr Mammen Chandy : Christian Medical College: CMC vellore
Dr. Mammen Chandy MD, FRACP, FRCPA Address :
Professor and Head. Department of Haematology
Dr. Alok Srivastava MD, FRACP, FRCPA Christian Medical College
Professor. Vellore - 632004, Tamil Nadu, India
Dr. Vikram Mathews MD, DM Tel : +91-416-2222102/2223603
Reader. Ext. : 2352/2472/2169/2890/2891
Dr.Biju George MD, DM Fax : +91-416-2232035/2232054
Reader. e-mail : haemat@cmcvellore.ac.in
For people who are interested in discussind PGD and BMT, he is an authority in the subject.
Also nice guy and very approachable, please feel free to write to him at mammen@cmcvellore.ac.in
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hi
as Manal said i sugest to consult Prof.Guido liucarally he have the best information a bout what you want
khalifa
state of kuwait