We are glad and honored to announce a great partnership with the Thalassemia Patients and Friends forum,the most important online forum for the thalassemia community worldwide,with more than 3,000 active members and 41,000 posts.
Dr. Pietro Sodani (scientific coordinator) and Eugenio La Mesa (chairman),the 2 Cure Thalassemia co-founders,will answer questions and moderate the new area of the forum entirely dedicated to Bone Marrow Transplant(BMT) and Cord Blood Transplant(CBT) both from matched and mismatched donor.
We thank Andy Battaglia, the admin of the forum,for this exciting opportunity to let us give our help and support to families and patients all over the world;we will give as many reliable information as possible on how to be cured from thalassemia,with no more transfusions.
“I find this to be an exciting cooperative effort and am greatly pleased to have an ally in Cure Thalassemia”,says Andy Battaglia.
This is the welcome message of Andy to introduce us to the members of the forum.
Eugenio,
Thank you for this opportunity to help more thalassemics to be cured. At thalpal we will continue to do our part to direct people to these committed doctors,so that their questions can be answered and so that they can make informed decisions about their future and the future of their children. At thapal,we welcome this collaborative effort and look forward to a relationship with Cure Thalassemia that will always put the patients first. I look forward to the expansion of your efforts in India and elsewhere,as the need is great and resources have been too few. We can change the world.
I AM GLAD TO KNOW ABOUT YOUR KIND EFFORTS FOR THALASSEAMICS
Shaheen,
we deal with the cure of thalassemia,which is Bone Marrow Transplant.
We also give free advice to patients from all over the world:
http://www.curethalassemia.org/free-advice-on-bmt/
You can read more about us here:
http://www.curethalassemia.org/about/why-choose-us/
Eugenio
im willing to donate bone narrow
Sir
my little brother is suffering in thalassemia ,and his age is 17years
but from last year he can not walk and also run,he always feel pain in legs and all body,
can you suggest me anything
nabi bux
karachi,pakistan
contact
03459990066
Mervin,
contact http://marrow.org
Nabi,
I’ll reply to you privately.
Eugenio
Dear Sir,
In BMT from Haploidentical mother,have you observed any difference in results among Class 1,Class 2 and Class 3 patients. Is the success rate different among the three classes of patients.
Regards,
Himanshu
Dear sir,
Dr. Sodani says that in class 3 haploidentical transplant is full of risk,it is not right therapeutic optnion.
In class 1 and class2 the difference in term of survival it is not so relevant.
Regards,
Eugenio
Hi,
Im thalassemia patient 30 years old unmarried girl.
Im having so much pain in my legs even i feel problem in walking. As im working ,this is causing me so much problem. Im also taking calcium and Vitamin D3 medicines.Plesae sugget.
I want to marry,if any thalassemia boy is intrested then pease contact.
Regards
Pooja Gupta
Delhi,India
9711143434
Hi,
you’ve also contacted us filling the form of the website,and we have replied to you privately.
Regards,
Eugenio La Mesa
I wanted to know the chance of doing BMT for the beta thalasemia major 5 year old baby gilr with the 50 % HLA matched parents. we have tried all the possible way to get the 10/10,10/9 matched donour all over the Marrow registry including NMDP,we had tried for the second baby for getting the matched marrow for BMT which was not at all matched. Please advice,We have been heared that in Germany they are doing BMT with half matched parents,If so pls let me know the success rate and risk involved
Noushad,
you can find the answer is our FAQ page:
http://www.curethalassemia.org/faq/
Success is 67% and mortality risk is 10%
,my son garvit is 22 months old babby suffring frome major thalassimia is their any treatment for him to aviod blood transfusion. we want to transplant but his hla matching not match his parents and his elder brtother its half match. so we want unrelated stem cell match with him.plz give me any best suggesion.
thank you
suman goel
9255478707
9255599063
karnal(haryana)
Hi,
as you can read in our FAQ,you can find a donor a in a bone marrow donor bank or you can use the mother as donor,even if she is not a match.
you’ve also contacted us through our website and we reply to you privately.
Regards,
Eugenio
Respected Sir
My Son Jitesh he 16 months old he is thalassemia Major is there any medicine treatment for him to avoid blood transfusion bcs i dont have much finance to give treatment of (BMT) Bone Marrow Transplantation.
Respected Sir,
you’ve also contacted us through our website and we have replied to you privately.
Regards,
Eugenio
Dear Rajesh,where r u from,if your near Hyderabad,hear free Blood transfusion going. i.e Thalassemia and sikkle cell society. if your interested you can.
Sir,
I have a sister who’s suffering such blood disorder…She’s in Taiwan right now and she’s diagnosed with thalassemia major last week and she’s experiencing am abnormal hair loss now. She told me there are times (mostly) that she cannot breathe freely and that she loses consciousness. She’s being out of balance most of the times. I knew what this is a blood disorder for people with Mediterranean blood but we are Asian (or so we thought). I don’t know what to do. We don’t have a mother and our dad is sick. I am the breadwinner and I can’t finance her BMT although I am not sure if I can be her bone marrow donor because I am not that healthy.
Thanks and regards,
Kathrine Tovera
Manila,Philippines
+639293541074
Madam,
thanks for your message. You’ve also contacted us through the website,and we replied to you privately.
Regards,
Eugenio
My daugher -in-law is suffering from b-thalassemia minor,however his husband ( my son) is non- thalassemic. Myself and my wife both are non- thalassemic. They have given birth to male child .What are risk factors of getting thalassemic minor/mojor child.
As you can read in our site,we only focus in the cure of thalassemia major. I suggest you to ask your question in this excellent online forum:
http://www.thalassemiapatientsandfriends.com
Dear Sir,
My Daughter Now She is 12 years old,She is suffering Thalasamia Major regularly we are transfusing blood at hospital.instead of this any other medicines other treatment,please help me………
Dear Swetha,
you’ve also written us using the contact form of our site,and we have replied to you privately.
Regards,
Eugenio
dearsir my son snehil bansal 12 year old suffering from thalassaemia major we want to BMT but we do not find HLA MATCHED so now we want to go with haplo matched HLA BMT FROM MOTHER TO CHILDREN PLEASE ADVISE US WHAT TO DO.whats the cost what will we required thanks and regards-
Dear sir,
you’ve also written to us filling the contact form of the site,and we have replied to you privately.
Regards,
Eugenio
Dear sir
my 3 year old son he is suffring from thalassemia major and me and my wife also minor thalassemia we r tranfusing blood at hospital me n my wife r thalssemia minor and elder son also minor they hla not matched with sibling please advice me for compleat information bmt in usa
Dear sir,
if you want to do BMT in USA I suggest to contact these organizations:
http://www.thalassemia.org/
http://www.bmtinfonet.org/
Regards,
Eugenio
my son is 8yrs old is suffering from thalassaemia major. we undergo the only treatment which is transfusion after every 15 days. we have tried for HLA matching with the sibling but that is only 50% matching. Please tell me how can we get the unrelated donor or any other treatment.
you’ve also contacted is through the form of our site,and we have replied to you privately.
Regards,
Eugenio
Any one who want to lose there baby,
admit at BMT unit of PIMS Hospital islamabad pakistan,
.
I have lose my daughter Fatima at BMT unit PIMS islamabad,
Dear Sir,
I am thalassaemia major patient since 1989 to till date. still i am regulary monthly blood transfusion. My problem is hemoglobin is become low 6 &7 point with in 25 days. kindly suggest advice me.
Dear sir,
as you can read in our FAQ,Dr. Sodani doesn’t recommend the Bone Marrow Transplant for patients older than 17 years old:
http://www.curethalassemia.org/faq/
Regards,
Eugenio
DEAR SIR,MY WARD MRS S.DEVI IS SUFFUERING FROM THALLESSMIA SINCE 5 YEARS..SHE IS ABOUT 65 YRS OLD.WHAT TREATMENT IS AVAILABLE IN INDIA IS GOING ON…MAY I REQUEST YOU TO KINDLY APRISE ME THE LATTEST TREATMENT FOR THE SAME…
We only focus in the cure of thalassemia major. I suggest you to ask your question in this excellent online forum:
http://www.thalassemiapatientsandfriends.com
my date of birth 11-03-1978
+9203023362350
ghulam mujtaba larik
fauji fertilizer company limited mirpur mathelo pakistan
MOHAN M P
October 10,2012 at 1:45 pm ·Reply
I AM 43YRS OLD,I LIVE IN SHIMOGA,KARNATAKA STATE,INIDA. I AM SUFFERING FROM THALASSEMIA MAJOR. I HAVE UNDERGONE SPLEENACTOMY IN 1987. I AM THE SOLE BREAD WINNER IN THE FAMILY. DOCTOR HAS ADVICED ME TO TAKE ASUNRA CAP 400MG,30 EVERY MONTH. COST OF THE MEDICINE IS RS.4,500/-.
AS MY INCOME IS LESS THAN RS.4000/- PER MONTH IT IS DIFFICULT FOR ME TO RUN THE FAMILY. I HAVE A DAUGHTER OF 9 YRS OLD.
PLEASE LET ME KNOW IF ANY OTHER TREATMENT FOR MY CASE IS AVAILABLE,WHICH I CAN AFFORD.
THANK YOU.
CONTACT NO.9241263993
Dear sir,
as you can read in our FAQ,Dr. Sodani doesn’t recommend the Bone Marrow Transplant for patients older than 17 years old:
http://www.curethalassemia.org/faq/
Regards,
Eugenio
i have miner thelesimiya which medicine i take
9429479023
We only focus in the cure of thalassemia major. I suggest you to ask your question in this excellent online forum:
http://www.thalassemiapatientsandfriends.com
i child have minor thelesimiya which is the best treatment in india &which medicine i take them kindly replay
Hi,
you’ve also contacted us with the form of our website,and he already replied to you privately.
Regards,
Eugenio
wich type of scd is higher type and wich is low type please email me on
kingkhanf9@yahoo.com,i am suffer but not now wich type is this becouse i live some what normal life
sir,if we want unrelated donor how can we contact or register. please tell me about the success ratio of bmt with unrelated donor or also about its cost
sir,
you’ve also contacted us using the contact form of the site,and we have replied to you.
Regards,
Eugenio
mohmad fahad qureshi fadar abdul subhan qureshi 9960428252 9923525413
hi,
my daughter is 2year 6 months old she is a patient of thelesimiya is conformed now 05-05-13. i blood transfusion a pack cell bag in a month.after transfusion her HB shows (10).this bag is waste in 25 days.I already 2and half blood bags transfusion her.Pls give me some sugesstion.
Hi,
we have replied to you privately. Please check your email.
Thanks and Regards,
Eugenio La Mesa