Discussion Forums > Working Towards a Cure

Interesting news!

<< < (2/3) > >>

anjjela:
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

nice friend:
 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

hopefulmommy:
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.

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

Sharmin

Manal:
Thanks a lot , that is very informative and reassuring :hugfriend

manal

Navigation

[0] Message Index

[#] Next page

[*] Previous page