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Thalassemia Patients and Friends and thalpal © A. Battaglia 2019





55293 Posts in 5909 Topics by 6206 Members
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This is Thalassemia Patients and Friends,
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Author Topic: Interesting news!  (Read 8020 times)
hopefulmommy
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« on: February 19, 2009, 08:42:20 AM »

http://timesofindia.indiatimes.com/Cities/Kolkata-/Baby-to-cure-thalassaemic-mom/articleshow/4152867.cms

best wishes
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Zaini
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« Reply #1 on: February 19, 2009, 09:05:33 AM »

WOW !!!
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Sharmin
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« Reply #2 on: February 19, 2009, 09:44:23 AM »

This is great - best of luck to Pinky and her new baby!

Sharmin
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Sharmin
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« Reply #3 on: February 19, 2009, 10:31:30 AM »

Can this really work? Since the patient is a full grown woman will the stem cells from the cord blood be enough? What will they do if they require more cells for proper engraftment? If this is possible its great news butttt
wish Pinky all the very best
maha
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Andy Battaglia
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« Reply #4 on: February 19, 2009, 12:04:05 PM »

I think this is actually a very important story for a couple of reasons. The first may be even more important than this particular case.

First, there is a terrible stigma regarding thalassemia in India, and in fact doctors advise thal minors to not reveal their status, as it often will be a factor in marriage decisions...many people will not allow their child to marry thal carriers. This is a terrible policy in a country with 40 million carriers but it is the reality and I was requested to help develop ideas to counter this with a public awareness program in India. If anyone has ideas how we can battle this type of thinking, please pass them along. A highly publicized case like this can show the public that in today's world, a thalassemic can lead a good normal life, including having children. This can help moderate the thinking of many people and more articles showing that thals can live normal lives are desperately needed in many countries where thalassemia carries this stigma. The overall positive nature of this article is in a way, more important than the individual case.

Secondly, this is also very interesting. There have been some mother to child BMT's that have been successful. There is no reason that it can't work in the opposite way. One thing I learned at the NYC symposium, is that using cord blood for BMT's is proving to be very successful and that this sometimes leads to a mixed chimera where the patient has both their original bone marrow but also the bone marrow of the donor. A 20-25% engraftment of the new bone marrow is sufficient to make the recipient transfusion dependent with an Hb over 10. This has also led to less severe host vs graft disease in the recipients. If anyone questions if it's important to save cord blood, I will say, yes it is very important.

There are two ways of looking at the media. Of course they want to sell their product, but we need to look at it as something that can be exploited to help spread awareness about thalassemia and the advances in treatments that have turned this once fatal disorder into a manageable chronic condition. I learned awhile ago that we should take advantage of media exposure to further our goals and help to spread our message. I look at this from the point of view of "marketing" thalassemia and to my way of thinking, we should do everything we can to create more awareness about thalassemia, as this will lead to better acceptance and even more funding. We can and should exploit the media to create more awareness anytime we see the possibility. I agreed to two television interviews in the Maldives because I knew it would create more awareness and it did. I could even be called a shameless self-promoter at times, because promoting myself, promotes my mission. We need to learn to use the media and take every advantage we are given.
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All we are saying is give thals a chance.
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« Reply #5 on: February 22, 2009, 03:30:31 AM »

i completely fall in with what u say Andy

there is no awareness in people about thalassemia....no one knows what thalassemia is.
its right to take advantage of media to let people know and become aware of it...
when someone gets to know about me...having thalassemia...i need to explain each person about it...but this way..one to one..only a few would get to know whereas media can inform a great number of people at one time.

More than being a stigma...i guess there is a major need to spread awareness in countries like India...that such blood disorder actually exists....there might be a very small fraction of people here that knows anything about it....and those would be the patients themselves...their families n relatives...n probably just a few friends....this is the way or source of the least knowledge about thalassemia that people have here..

The other thing about the stigma is also right...that once it is known that so n so person is thalassemic...it can b difficult for tht person to get married....even if its thal minors

angela
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« Reply #6 on: February 22, 2009, 04:01:26 PM »

 I Agree with you Andy and all other who replied on this board , but i never been treated in that way (stigma), it could be bcoze of education bcoze my whole relative are very close to our family and well educated as well , i think that probleme is exist's in the rural areas not in big city or i never wet out much , not very clear abt it , but where i usualy go to buy my PC softwares and Hardwares , there are people with a good knowledge of IT must be well educated but they never heard of Thalassemia , when i was at a shop buying some hardware shop owner asked me why i m too weak and then when i told him thalassemia he asked me  " Thalassemia !! i never heard of it .. wat is this ??,, will you please tell me a lil more abt it ...  "  then i told as much i can ...  i mean to say even well educated perso never heard of this Word " Thalassemia " ... all we have to do to stop spreading it, print short flyer abt basic info and how to prevent thal by testing before marriage ... and there aare alot of ways to talk abt it , all you need to have is courage to say that i m a patient of Thalassemia, its a hereditary diseas and then keep going on ...

Best Regards
Take Care
Umair
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Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair
hopefulmommy
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« Reply #7 on: May 13, 2009, 11:28:51 AM »

Hi All,
I have been wanting for writing for a long time, but that just got postponed.Our daughter is doing good, her Hb is in the 8 range and she is growing up. We visited Dr. Vichinsky, CHORI Oakland, sometime back and here are some of the facts which he mentioned, in a summary. I am also attaching a food list which we got from there. It was great to meet one of the leading persons on thalassemia presently. Many heartfelt thanks to this group for doing such excellent dissemination work on Thalassemia; we came to know so much so easily.

Few Important points: Thalassemia is manageable condition and kids have a normal life span and life quality with care. They grow up, go to college, marry, do job and live their life to the fullest. It is important to bring up kid in a usual way and not be overly protective or scared or treat child differently. Otherwise there is a negative impact on the child’s psychology.

1.   Hb F inducers: Taking hydroxyurea is mostly safe after 2 years. The next generation of inducers like Decitabine, Butyrate, Azacitidine seem to be even more potent and clinical trials for these in infants are also ongoing. Side effects studies of these are also being done.
2.   Wheatgrass: Can be tried
3.   Gene therapy is also a treatment which may come up in future. Some successful cases are there.
4.   Stem Cell Transplantation: In the US the cure rate is around 91% and death rate is 4%.Open unrelated stem cell transplant is also being done.
5.   Antioxidants: Alpha Liopic acid, L-Carnitine are  being increasingly used  in thalassemia to improve the patients health.
6.   Spleen: It is generally useful not to remove the spleen for better immunity of the individual.
7.   Starting transfusion: For our daughter, we need to keep a watch on her growth, activity, whether excessively sleepy or not, how she does clinically, Hb level, facial bone growth to decide if and when to transfuse. If there are more than 2 event where the Hb falls below critical levels (around 6-7) then decide for regular transfusions. Every 3 months we need to take forehead and side pictures and show it to the doctor and do head measurement
8.   Transfusion:  Red cell phenotype needs to be tested before transfusion and checked for 6 proteins.
9.   Antibiotics: As we are nervous about travelling, he said travelling with antibiotics is a good idea to avoid high fever and hemolysis.
10.   Chelators: Exjade/ Desferal should be used.
11.   Tea/green Tea: All thalassemia patients should have tea/green tea .
12.   Iron deposition tests: Periodic tests of heart, organs, gonads, (MRI/ SQUID) bone density should be done.
 

Disclaimer: These are all in context to my daughter’s case who has Ebeta Thalassemia and is 14 months. These are points I developed with my  understanding after discussing with doctor. May or may not be correct, please confirm with your doctor.
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Sharmin
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Little A


« Reply #8 on: May 13, 2009, 02:23:49 PM »

Thank you kindly hopefulmommy, for sharing this with us.  They are pretty amazing in Oakland aren't they? 

Sharmin
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Manal
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« Reply #9 on: May 13, 2009, 07:05:26 PM »

Thanks a lot , that is very informative and reassuring

manal
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Zaini
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« Reply #10 on: May 14, 2009, 04:46:41 AM »

Thanks for sharing this is really helpful.

Zaini.
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hopefulmommy
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« Reply #11 on: May 14, 2009, 11:29:26 AM »

All of you are so welcome!

Yeah they are very nice and helpful  people at Oakland,it was  great that we could go there. I am fairly new to the US and find it really amazing that you can get access to such excellent people  and caregivers, without much difficulty. When my daughter was detected with Thal a year back and I was going crazy, I came to know about Dr. Vichinsky through the net and this forum.After calling his office few times, I got  a call from him and he spoke 15 mins explaining what it was to have thal and that it is not the end of the world and that my child would have a good life. I was really touched.

Also, getting to know so much from this forum keeps me  alert and abreast with the latest things, I feel confident to a great extent. You guys do a very good job.

Best wishes
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