Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: sachinupneja on May 02, 2009, 12:39:08 PM
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hi dears, can any body help me to find marrow donor for my 2 year son he is suffering from thalassemia. our family HLA can't match with him. if anybody know where are donor avail in india pls write me to following email id sachin.upneja@yahoo.in. thanx
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HI Sachin,
:welcome2
Best Regards
Umair
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Hi Sachin
Mumbai has a bone marrow database if you are in search of unrelated donors . The bone marrow registry is housed in parel`s Tata memorial hospital. For further info check this link
http://www.thalassemiapatientsandfriends.com/index.php?topic=2777.0
take care
maha
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Hi Maha
Any idea that how can we register in the bonmarrow bank and if I register myself there, can i get marrow in exchange of marrow for my son ?
Regards
Sumit
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Hi Sumit
I don`t know how the bank in Mumbai is run. Usually the banks register HLA tissue typing of voluntary donors and in case of a match, the donor is contacted for collecting his bone marrow. I even don`t know if unrelated bonemarrow transplants are run in India for thalassemia. Usually unrelated transplants are carried out for malignant cases like leukemia as only a transplant can save the patient.
take care
maha
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Sachin and Sumit,
You both can get in touch with Tata Memorial hospital and ask for the procedures for getting your child's HLA into their registry. They have set up the unrelated registry in Mumbai, India.
The donor's registry is for people who want to donate their bone marrow. The initial test is done with a simple blood test. Once, there is a match with a waiting patient, they call up the donor to see if he/she is still interested and then complete testing is done for HLA matchup.
With the registry having more and more donor's signing up, lots of people can hope for a cure - not only for thalassemia, but also for serious health problems like lukemia.
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Hello sachinupneja and welcome to our site. With proper care your child should do very well despite having thalassemia. Have you started your son on chelation? We are all here to guide you in making sure that your son is gets proper care. Thalassemia patients can live normal and long lives these days if they comply with treatment. Also, if you do find a match and decide to pursue transplant, the outcome is best if the thalassemia has been well managed.
Before pursuing transplant please be aware of what a transplant entails and all of the risks and benefits involved. You may also want to look for a cord blood transplant, which may be safer than a bmt. There is also the option of preimplantation diagnosis ivf - so that you can have another healthy child and use the siblings cord blood for your son.
Best of luck, we hope that we are able to provide information that is helpful to you.
Sharmin
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Hi Sachinupneja
Just like Sharmin pointed out. Please note that BMT is a risky option and you should get complete knowledge of all its risks and dangers before opting it. With todays advancement in managing thalassemia it is sometimes viable to opt life long transfusions and chelation over BMT until more safer ways are available.
That does not mean that you should completely preclude BMT but just weigh all your options and go with what you feel in the best interest of your child.
Regards
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Hi Sachin ,
I'm father of my cutiepie anisha . she is also thal major .BMT is a risky procedure , weigh your options before u decide for it . Like u i've also weighed my options and I'll be going for it. AIIMS in delhi , TATA memorial cancer hospital in bombay maintain bone marrow registry. Contact them for details . You would have to commit yourself for as a donar irrespective of wether you get the matching bone marrow or not. matched bone marrow is provided to u free. Dr Mehra is HOD in AIIMS . Other option for u is relicord sells stem cells cost of which is 2.5 lac per unit and chances of getting GVPD with them is comparitaviely less.
Best of luck
vinay
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The bmt itself is not so dangerous as the 1 or 2 years after the bmt. That's what me has been told. Not very helpful information, I know.
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hi dears, can any body help me to find marrow donor for my 2 year son he is suffering from thalassemia. our family HLA can't match with him. if anybody know where are donor avail in india pls write me to following email id sachin.upneja@yahoo.in. thanx
hello sachin , my nephew is even suffering from major thalassaemia and his HLA type also doesn't match with his family can u tell me where can we regiter his HLA for a match.....
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There is a bone marrow database in Mumbai. See http://www.thalassemiapatientsandfriends.com/index.php?topic=2777.msg26839#msg26839
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andy,
i would like to know abt bone marrow bank in india for unrelated donar for my nephew ....ruchi
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I already posted the link again in the previous post in this thread.
http://www.thalassemiapatientsandfriends.com/index.php?topic=2777.msg26839#msg26839
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hi i m Jatinder Batra from chandigarh, my son is 2 yrs old and thal Maj. can u suggest me how to go for a unrelated match
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I would suggest contacting Dr Sodani with your questions. You can send questions to him through the link at
http://www.curethalassemia.org/free-advice-on-bmt/