Thalassemia Patients and Friends
Discussion Forums => Working Towards a Cure => Topic started by: kabir_love on November 14, 2009, 08:31:27 AM
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hi every1.
long time no post well i was just having normal life for a while (i guess).. we`ll this post is regarding to gain some knowlege about my future action which i dont know from where to start with.
my second daughter we had saved her cord blood in relicord as she was 100% mactch with my thal. major son , but unfortunatly she also had a big problem which by the time we was gone was not 100% diagonse. it seems as HLH or LCH or some thing like that we got 100 reports of test and biopsy done. but now the preseved CORD BLOOD is as per indian doctor (ALSO MAMEN CHANDI) as i discussed in last thal confernce held with dr. mamen chandi that these cord blood was of no use cuaz the diagnose was not there. so we are now very diappointed. ANY of us here does have little knowledge about the advanctment in these and any where in the world we can take for cord blood too and they can run there test or CLONE it or any thing we dont know and can be used then for my son for his stem cell transplant ??? i m really looking for this cauz now this is the only way we can find out.
so please any of u can help me in this INFECTED CORD BLOOD to be good enough and test them very well to use them ! regarding CLONIG matter also is that of any help here ? please advice
regs
micky
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Actually i have no idea about such matter but i think that you should contact a genetic councellor in order to direct you to where to investigate this matter
Good luck
manak
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i think doctors would not use it because it has been infected, great care is taken especially in cord blood transplant because these r the cells that will multiply in ur body..........
doctors have even reservations for using a person's own blood after he has got disease although it is being done now............still this point does not restrict the importance of cord blood transplant
"Dr Andrew Gennery, a pediatric immunologist at Newcastle General Hospital says if a person gets leukemia he will be worried about transferring his own stem cells back into him, I'd rather use a donor who has no leukemia."
this quote shows that cord blood should be totally free of infections, and u should avoid using it even if it is disinfected.
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Hello Micky,
I know what HLH or LHC is. I also know families who can tell you more about it - if that's what you want.
Trust me, if it's really HLH (or LHC) you don't want to use that as a saving cord blood, because it can give your child an other blood disease.
I might missed something -so my apologies when I sound rude - but your second daughter is still with you today?
If I can give you any more help, let me know it.
Warmest wishes, Dore
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but your second daughter is still with you today?
Dore, she is not. May her soul rest in peace :sorrow
manal
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Owh, how rude I sounded :(
I am so so sorry. May her soul rest in peace :candle
My apologies.
Losing a child is the worst thing in life - our family has to deal with it too.
:hugfriend
As for tje cord blood itself. I wished for you there were must further with gene therapy.
Dore
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nothing to be sorry now. :) , life is very strange sometimes dont know where gonna land finally....
looking for best of all.
regs
micky
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You sure are very strong....May this strength always be by your side apart from all of us here....
God bless your family....
Madhavi
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Iam sorry about your second child :( .
But i appreciate your positive attitude towards life :yes .
Keep your spirits high.Things will turn in your favour.
There is nothing more powerful than a positive approach towards life.
Everything will definitely turn alright for your child.
Take care,
Viji