hi Iam new my younger daughter is thalessemic major

I will be very much thankful to you if  you reply .we come to know about the disease when she is just 2 month olds she is just getting pale her doctor has written some routine test for her in which her hemoglobin come out to be 4.5 the doctor ask us to go for blood transfusion .In hospital before blood transfusion they have done hp electrophresis and bone marrow test for her there hemotologist told us that she might be thalessemia major and asked us to for our thalessmia test in which we both come out as  B-thalessemia minors.

Her paeds  had told us that it is very early to diagnosed her as thalessemia major we will diagnosed her only when she will be six months of age but as her hemoglobin has fall to such level and you both are thalessemia minor she might be thlaessemia major . From that day ie, 15 of may my daughter s has under gone four blood transfusions. We both my husband and me are unable to with stand that seen still we are doing. We only want to know as a girl what all problem she will face in future. If there is any such society where I can register her (I live in delhi I am IT professional and my husband is a pharmacist). If you can help us I will be highly grateful to you

With thanks & regards
Rupali

Hi Rupali,

to the site.

You can contact your Thal. centers in Delhi. See our Treatment center section to find any.

Thal. is a manageable condition. Just keep her Hb. above 10g/dl all the time and comply with the chelation therapy when she is old enough and she would be able to live a long and happy life just like any normal person.

Feel free to ask any question that you have in mind.

Wishing you all the best.

Dear all

CAn Iany one tell me after how many transfusions iron overloading starts

and also if any body knows regarding the thalessemic center in delhi . addresses and phone numbers

and please send me the details how a child face this problem when she grow with that that disease . I am really worried about her for how many years she would live.


With regards
Rupali

Hi Rupali,

The Iron overload is considered when her Serum Ferritin reaches 1000 ng/ml this depends on the amount of blood she has received. Normally it takes about two years of transfusions to get started on the chelation (removal of excess iron) therapy.

You should get her SF checked when she is 2 years old.

Don't worry about the future if you are faithful to the treatment. She can live as long as any normal person and have the same quality of life as everyone else. This is the 2nd millennium and now Thal. is no longer considered as a "fatal disease" and is considered as a "manageable condition"even in the developing countries of the subcontinent.

Wishing you all the best. I hope some user will guide you to a Thal. Treatment center in Delhi.

hi Rupali,
my son started transfusing at 4 yrs of age.  his hemotologist told us that chelation would start at about after 20 transfusions.  and they were right.

cheers vic

Rupali, our daughter is also getting monthly blood transfusion since she is 2 months old. Her doctor in Boston told us that we will not start chelation till she is 2 years old, even though she will probably have more than 20 transfusions. You should ask your daughter's Thal doctor when they will start her chelation. The chelation is to be started under a doctor's supervision, no matter which method of chelation you decide to use.
About your daughter with TM, she will grow up as normal as any other kid as long as you are dilligent with her treatment and provide her the education to grow up as strong & independent person. That's what we want to impart to our daughter. But first, we have to be strong and that's what me and my wife are trying to be.

Hi Rupali,

I am sorry to hear this news. We also had the same situation and trauma when our daughter was diagnosed as Thalassemia major and got her blood transfusion. Currently there has been lot of improvement and advancement in thalassmemia care that you really do not face too many problems. There is lots of information availble in forums like this and support groups which help us to take right care. When I was in india , I was associated with Thalassemic society of india . their website it www.thalassemicsindia.org. They have lots of good information and support for thalssemia care. I understand that it is a difficult situation but you need to have courage, with proper care and attention your kid would be all right. My daughter is now 3 years old and it growing normal in-fact ahead of her milestones.

Take care !

Om

Organization: Thalassemics India
Address: C-1/59 Safdarjung Development Area
New Delhi 110016
INDIA
Telephone: 11-661199 / 11-6845461
Fax: 11-6855721 / 11-6462970