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International Thalassemia Day
mustho:
It’s really interesting, Maldives is at last on thalassemia forum, and Thalassemia is major problem. I have learned from Company in USA that some of you who are going to Maldives have collected some Sub Q needles to be taken to Maldives. We really appreciate for these help. Thalassemia patients in Maldives really need world wide support. We have over 500 beta thalassemia major patients who receive regular blood transfusions. Usually in Maldives we have directed donors either from family and friends, leuko depletion is optional for those who can afford bed side filters. I hope from people in this forum else where in the world we will get more support. I am Maldivian studying in North America, to treat thalassemia and doing research on thalassemia iron chelation.
Andy Battaglia:
Since the first time I participated in a group chat at Thalassemia Patients and Friends, at Lisa's request, the Maldivians have had a special place in my heart. That day I met Maako, Niuma, Vittey and Shaneez, and they have been friends ever since. I have made many other Maldivian friends and am so happy that finally I will get to meet them face-to-face.
The world may have had a hard time finding the Maldives, but the Maldivians have reached out to the world and their friendship is drawing the world into them. They've got a big problem with 18% of the population carrying the thal gene and we need to give them all the help dealing with this that we can. It's been done in Cyprus and it can be done in the Maldives. I challenge the international community and the international organization to make this a reality through testing before marriage programs. Let's get it done.
And I'd like to remind those in the US who have given up pumping that I am looking for a working pump in good condition to take to a young girl in the Maldives. Your help would be greatly appreciated. Please message me if you can help.
Thank you,
Nur:
can anyone tell me since when International Thalassaemia Day are being celebrated? :huh and the story behind this celebration?
mustho:
Hi Andy, I have learn fron Nofolk Medicals in USA that you are planning to visit to Maldives. I am a Maldivian here in Canada,These friends you have mentioned Vitte, Niuma and Maaco they are nice kids, I know them all, as I have worked in thalassemia centre for some time.
At present I am working to find an alternative for iron chelation, I will be happy to share the knowledge in this forum.
§ãJ¡Ð ساجد:
--- Quote from: mustho on April 22, 2006, 07:51:24 AM ---At present I am working to find an alternative for iron chelation, I will be happy to share the knowledge in this forum.
--- End quote ---
Hi,
Please do tell us soon. I am anxious to get away from all that needle pricking no matter how may pills I have to take or drink what is unpalatable!
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