Thalassemia Patients and Friends
Discussion Forums => Curing Thalassemia. Bone Marrow & Cord Blood Transplant => Topic started by: Andy Battaglia on February 29, 2012, 12:54:10 AM
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For a list of BMT centers around the world, please click on the link below. This list will change and they would also like to be informed of centers that are not on the list.
http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/
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Thanks Andy, we are constantly adding new BMT centers.
If any member of the forum wants to suggest new centers, please leave a comment here, or contact us through the Cure Thalassemia site: http://www.curethalassemia.org/contact/ (http://www.curethalassemia.org/contact/)
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Dear All,
Please add, Dr. Chun Fu Li of Nan Fang Hospital, Guangzhou China.
I had the pleasure of meeting him in Turkey last year.
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Dear Syaida,
thanks for the information, we have updated the page:
http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/ (http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/)
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Dear dr. La Mesa, dear Andy,
we had meet prof.Lucarelli last week ago in Rome.
He said that the unrelated bone marrow transplant isnt't a good way...too diffucult..too risks...especially in case of China..like our case.
in fact we have adopted a 4 years old child alfathal CS from Guanzhou.
He speak us about gene therapy that in MIlano San Raffaele it'll devolepped.
I've contacted him but they said that this cure isn't able to save the ALFA THAL costant spring....
At moment we d'ont know what have to do....we are very preoccupied because our son it'll insert into cronical trasfusional protocol.....
Have you som suggestions?
thanks for sharing
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Dear Leonardo,
Prof. Lucarelli is the worldwide authority in the filed of thalassemia (and Cure Thalassemia scientific advisor), you have met the best doctor in the world for this topic. I can't add anything, I'm so sorry.
I'll pray for you and your child.
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Folic acid and transfusion when required is the protocol for HbH constant spring.
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Dear Leonardo,
Prof. Lucarelli is the worldwide authority in the filed of thalassemia (and Cure Thalassemia scientific advisor), you have met the best doctor in the world for this topic. I can't add anything, I'm so sorry.
I'll pray for you and your child.
dear Eugenio La Mesa,
yes I know....Lucarelli it's the best doctor but I would know if someone in the world are planning to study gene therapy about alfa thal costant spring. this is the topic. The reserche carried on by MIlano staff it's dedicated only for beta thal.
Have you some data number about worldwide alfa thal costant spring? It's really few interesting this disease for scientific world????
Andy, yes I know about folic acid and trasfusion (montly in my case) but how many years do you think LEonardo will survive?
sorry for my insistence.
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If the thalassemia is well managed with transfusions and chelation, the child should live a long time. The life expectancy of thals has increased greatly over the past 20 years, with thals now living into their 60's. HbH constant spring is usually a less severe condition that beta thal major, so there has not been much emphasis on finding a cure.
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thank's Andy, but what are the difference between beta thal major and alfa thal costant spring?
Leonardo has to set hb level over 9 to prevent bone abformity then the trasfusion are set montly!
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The transfusion schedule is usually more like intermedia than major. Hence, once per month rather than every 2-3 weeks. In the long run, iron stores should be easier to manage, as there will be fewer transfusions per year.
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dear Eugenio La Mesa,
yes I know....Lucarelli it's the best doctor but I would know if someone in the world are planning to study gene therapy about alfa thal costant spring. this is the topic. The reserche carried on by MIlano staff it's dedicated only for beta thal.
Have you some data number about worldwide alfa thal costant spring? It's really few interesting this disease for scientific world????
Dear Leonardo, I don't have any numbers about what you're asking. If I'll find some, I'll let you know.
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Thank's lot Eugenio, I'll wait it.
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hi.. pls add few names in list of BMT hospitals in Pakistan
1) Aga Khan hospital - Karachi
2) Children Hospital - Lahore
3) CMH -Pindi(islamabad)
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Can you please confirm that each those 3 hospitals have a BMT unit?
Let me know so that I'll then add them
Thanks
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hi and good day..... yes its confirmed.... as my son is the patient of THAL MAJOR. His age is 14 years, he got 100HLA match with his sister of 2 years. and i m looking hospital who having this facility. i visited CMH pindi by my self (sure they r doing BMT)........ Children hospital lahore just started BMT. and its in public sector(govt hospital)......AGA KHAN karachi is also doing BMT. and very soon my family having appointment with the BMT team for initial evaluation of my son.
so its 100% confirmed about these 3 hospitals.
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Hi, and good day to you.
thanks for the information, I've updated the list:
http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/ (http://www.curethalassemia.org/bone-marrow-transplantation-bmt/transplant-centers/)
For CMH pindi I haven't been able to find a website and/or Facebook page, if you have one please give it to me.
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hi and salam....
i will try my level best to check and let u know.....
regards
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hi....
i like to share this sad news that..... CHILDREN HOSPITAL LAHORE.... BMT unit is closed now. due to some administration issues...
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I'm sorry to hear it. Thanks for the news, I've updated the page.