Hi all ... I just joined

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Offline Bostonian_04

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Hi all ... I just joined
« on: September 14, 2006, 03:42:26 PM »
Hi all,

I was googling on the net yesterday and I came across this website. I am happy to have come across this huge information source and support network on thalassemia.

A quick introduction from my side is in order :)

Our daughter who is just 2 months old now has been diagnosed with compound heterozygous beta thalassemia. We do not know whether it clinically present itself as thal major or thal intermedia - only time will tell, I guess.

We got the final report yesterday and also found out the hard way that both me and my wife are silent beta thalassemia carriers. I am heterozygous beta(+) and my wife is heterozygous beta(0) (we are originally from the Indian sub-continent, now living in the US, and new-born screening for thal was not done for us when we were born :))

Well, as time goes by, you will hear more from me .. in ways of updates in our daughter's life, but I think mostly by ways of questions, which I hope others may have posed in this forum before me looking for suggestions/answers/comments/advise.

So long for now ...

Quis custodiet ipsos custodes ? - Plato

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Offline Narendra

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Re: Hi all ... I just joined
« Reply #1 on: September 14, 2006, 04:38:11 PM »
Hi,

Welcome to the site.

I too am living in Boston area and Indian by origin. It is hard to hear about little kids being diagonised with thalassemia. Where did your daughter get diagonised and where are you going for visits. Children's Hospital in Boston is good.

-Narendra

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Offline Christine Mary

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  • Mother of Lauryn, who has Thal Major
Re: Hi all ... I just joined
« Reply #2 on: September 14, 2006, 04:53:07 PM »
welcome bostonian!!

i ,myself recently joined this site...and BOY,IS IT GOOD THERAPY! :rotfl
im sorry to hear about your lil one. i know how you feel  :hug
if u need anything, let me know. maybe we can be a good support of info for each other  :console

take care,
christine

Lauryn's Mom

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Offline Bostonian_04

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Re: Hi all ... I just joined
« Reply #3 on: September 14, 2006, 05:09:37 PM »
Hi Chrissy, Narendra,

Thanks for the welcome .... this site is sure god sent. Yesterday we were really very down, we really did not know what to do. But after reading posts out here, I know for sure that our daughter will lead a good and full life with all the friends and well wishers that are out there.

narendra, if you do not mind me asking, do any of your family members have beta thal. If so, who are you consulting with in the Boston area and in which hospital. We are currently going to the Umass Memorial Medical Center and our daughter is being treated by Dr. Naheed Usmani, the director of the Pediatric Hematology/Oncology department.

Take care,

Bostonian
Quis custodiet ipsos custodes ? - Plato

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Offline Narendra

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Re: Hi all ... I just joined
« Reply #4 on: September 14, 2006, 07:23:33 PM »
Quote
narendra, if you do not mind me asking, do any of your family members have beta thal. If so, who are you consulting with in the Boston area and in which hospital. We are currently going to the Umass Memorial Medical Center and our daughter is being treated by Dr. Naheed Usmani, the director of the Pediatric Hematology/Oncology department.

My hemoglobin Electrophoresis shows MCV smaller which led my Hematologist to suspect that I have Thal(Minor). But, the results came out with the words "MIGHT" have Alpha Thal(Minor). So, I am still NOT sure if I can count myself a Thal(Minor). I visited Children's Hospital Boston when my daughter's pediatrician wanted to give her Iron(as her Iron level was low) and I wanted to make sure she is NOT a Thal(Minor), but again the results are all in-conclusive if she is Thal(Minor).

The doctor's there mentioned - there are quite a few patients there who are Thalassemia(Major). There are patients who are well in their 50s and living a normal life. There are patients who had the option of Bone Marrow Transplant but did NOT risk themselves. Dr. Melody Cunningham from Childrens Hospital resigned after I met her, so I do NOT know who is heading the Department of Thalassemia at Children's Hospital Boston. The details of Children's Hospital are at as follows
Children's Hospital Boston
Hematology/Oncology Department
300 Longwood Ave,
Boston, MA 02115
Phone (617)-355-7700

Re: Hi all ... I just joined
« Reply #5 on: September 15, 2006, 12:01:22 AM »
Hi Bostonian-04 you have written your daughter has been diagnosed of compund heterozygous and you both have bete thalassemia heterozygous. My question is did they explain on which genetic compound heterozygous it is.

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Offline Bostonian_04

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Re: Hi all ... I just joined
« Reply #6 on: September 15, 2006, 01:46:34 AM »
Hi mustho,

The doctor indicated that our daughter has inherited the mutated genes from both of us. Since my wife and I have different mutations of the beta-globin gene, the condition that our daughter has inherited is called compound heterozygous beta thalassemia - both of her beta-globin genes are mutated, but the mutations are different.

If both parents have the same beta-globin gene mutation and the baby inherits the mutated genes from the parents, then it is called homozygous beta thalassemia.

Hope this answers your question.

Bostonian_04
Quis custodiet ipsos custodes ? - Plato

 

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